This year’s international theme is diagnosis: ‘The Earlier You Know, The More You Can Do: A Dementia Diagnosis Matters.’

Diagnosis matters because it can explain frightening changes, reduce blame and shame, and help people and whānau plan. But diagnosis only opens the door. What matters next is whether people can actually access support, services, navigation, respite, community dementia services, and age-appropriate responses that fit their lives.

That is why this year’s Alzheimers NZ Political Panel matters. It is being held live on Zoom on 1 September, from 6 pm to 7 pm. At the time of writing, registrations were still open, but registration is needed to receive the Zoom link and password. Registration and details are here

Alzheimers NZ is asking health spokespeople from the current parliamentary parties what their plan is for dementia mate wareware in the lead-up to the 2026 General Election. Its event page says three New Zealanders develop dementia mate wareware every hour, and that without urgent action dementia risks overwhelming health and aged-care systems, with major impacts on whānau, communities and the economy.

With the General Election on 7 November, just over two months away, this Political Panel is an accountability moment.

My starting point is simple:

New Zealand has had years of dementia plans, speeches, endorsements, working groups, pilots, sector engagement, parliamentary answers and official acknowledgements. Dementia has been recognised. Ministers have spoken warmly about it. Some dementia-related activity exists.

We have seen this pattern before

I have already written in detail about what happened to the first Dementia Mate Wareware Action Plan 2020–2025, so I am not going to retell the whole history here.

The short version is this.

The dementia community developed an Action Plan because the need was already clear. People living with dementia mate wareware, whānau, carers, clinicians, researchers, NGOs and sector leaders had been saying for years that New Zealand needed a coherent national response.

The 2022 Cabinet paper seeking endorsement of the Action Plan said the Plan would guide improvements in dementia mate wareware supports for people with dementia and their whānau and carers. It also made clear that dementia supports were inequitable, not always appropriate, and not meeting the needs of the current dementia population.

The Cabinet paper also acknowledged something crucial. Implementation would require a whole-sector response, greater leadership from the Ministry, and greater investment from Government. Additional funding would be required to make the more transformational changes in the Plan and to fully realise its vision.

In other words, the issue was known from the start.

A national plan without sustainable funding would not be enough.

My earlier OIA work and analysis showed that the original funding proposal was much larger than the funding eventually provided. Treasury’s preferred option was an initial $12 million over four years, while further funding was deferred. Treasury also flagged risks around navigator workforce recruitment, implementation during the pandemic, and health reform.

Budget 2022 did provide $12 million over four years. That mattered. It supported seven local or regional pilots, governance work, the Dementia Mate Wareware Network, the Leadership and Advisory Group, and evaluation.

But it was not full implementation.

It did not provide a national dementia navigation service, a universal post-diagnostic support offer, sustainable funding for community dementia services across the country, or a national age-appropriate pathway for people with younger-onset dementia.

By the end of 2024, the Kaitiaki of the Action Plan had told the Health Committee that only one action out of twenty six actions had been fully implemented and another had a partial tick. My earlier article traced how the Plan became a limited set of pilots, governance structures and evaluation, rather than the fully funded national response the dementia community had sought.

For the first Action Plan 2020 - 2025, the public record at least shows a funding path, even though that path led to limited implementation.

For the refreshed Action Plan 2026 -2031, I have not yet found the equivalent path at all.

Costello’s words created a test

On 24 September 2025, Associate Minister of Health Casey Costello was formally handed the refreshed Dementia Mate Wareware Action Plan 2026–2031 at the Alzheimers NZ Summit. Alzheimers NZ records that the refreshed Plan was presented to Minister Costello by the Kaitiaki group: Alzheimers NZ, Dementia NZ, the New Zealand Dementia Foundation and te Mate Wareware Advisory Rōpū.

That was not a minor moment.

Minister Costello is the Associate Minister of Health with responsibility for dementia management. She was receiving a refreshed national Action Plan from the dementia community.

In her speech, she said things that mattered.

She acknowledged that dementia was not just an aged-care issue. She acknowledged that younger people with dementia may need different supports and services. She said she and Minister of Health Simeon Brown wanted a more joined-up approach to dementia, including better support, navigation and respite. She also indicated that more funding would be needed, but that she and Minister Brown would have to persuade Cabinet colleagues. I have written about those comments previously, because at the time they sounded like a Minister who understood at least some of the issues.

Those words created a test.

After the speech, the questions were straightforward. Did the refreshed Plan go to Cabinet? Was a Budget 2026 bid prepared? Was Treasury asked for fiscal advice? Were the Kaitiaki brought into an implementation process? Were actions mapped to work programmes? Was funding identified?

Budget 2026 was where those words should have met Cabinet decision-making.

The Budget process point matters here. My understanding is that the process for new spending bids in this term of Government has been tightly controlled, with the Minister of Finance playing a gatekeeping role over new spending proposals. That raises obvious questions. Was Minister Costello invited to submit a Dementia Mate Wareware Action Plan 2026 - 2031 bid? Did she seek one? Did Minister Brown support one? Or did the refreshed Action Plan never get that far?

The public record I have found does not answer those questions in a reassuring way.

It also connects directly to what Catherine Hall and Dr Matthew Croucher discussed in Alzheimers NZ’s recent Windows on Dementia podcast on the Action Plan journey. Their conversation matters because they were not starting from scratch or speaking in slogans. They were reflecting on years, around fourteen years as Alzheimers NZ’s CEO in Catherine’s case, and more for Matthew in his various roles, of sector work, political engagement and the difficulty of turning an agreed plan into funded implementation.

Matthew put the political problem plainly. By politics, he did not mean party politics. He meant how societies decide “who gets what resources”. The dementia community, he said, had increasingly identified the gaps and the ways to get from where we are to where we should be. There was “no mystery” about what needed doing, but the political decision-making about resources was not following.

“It hasn’t resulted, though, yet in decisions to allocate any particular piece of the pie or to make the pie bigger.”

Catherine Hall, Windows on Dementia podcast, ‘Taking action’

That is the context for the latest OIAs and Written Parliamentary Questions.

The dementia community has done much of the work. The gaps are known. The solutions are not mysterious. The missing step is the political and resourcing decision to turn plans into funded implementation.

None of this proves that no dementia-related work is happening anywhere. My point is narrower, but important: the public record I have found does not show new funding, a Cabinet-backed implementation decision, or an action-by-action public implementation map for the refreshed Dementia Mate Wareware Action Plan 2026–2031.

Taken together, this is not a record of clear implementation.

It is a record of acknowledgement, references to existing work, inherited pilots, future evaluation, limited visible advice, and no public implementation map.

‘Existing programmes’ is the new ‘seven pilots’

The dates are revealing.

For the first Action Plan 2020–2025, Costello’s WPQ answers repeatedly relied on the seven Budget 2022 service trials as evidence that implementation was underway, up to and including 3 June 2026.

For the refreshed Action Plan 2026–2031, the wording had already shifted. On 2 April 2026, in response to the Labour Party MP for Taieri, and Seniors spokesperson Ingrid Leary’s question about additional funding for the refreshed Plan, Costello said actions would be supported through ‘existing programmes of work and ongoing system initiatives’.

By 30 July 2026, that phrase was repeated in response to Scott Willis’s question about whether the Minister was committed to fully implementing the updated Plan. This time, the seven Budget 2022 service trials were folded back into the answer as part of those existing programmes.

That matters because the refreshed Plan is no longer being described as a funded implementation programme in its own right. It is being described as something to be supported through work already underway.

Unless Government publishes an action-by-action map, ‘existing programmes’ risks becoming a way for the refreshed Plan to disappear into the system it was meant to change.

If the refreshed Plan is genuinely being implemented through existing work, the Government should be able to show which action sits where, who is responsible, what funding is attached, what milestones apply, how progress will be reported, and how priority populations, including people with younger-onset dementia, will be tracked.

Without that, ‘supported through existing programmes’ is not implementation.

It is absorption.

For people under 65 who are too readily absorbed into an aged-care system, that distinction matters.

Younger-onset dementia is named, then blurred

My own advocacy focus is younger-onset dementia because that is the area I know best through lived experience, research and advocacy.

But this article is not only about younger-onset dementia. It is about both Action Plans and Government accountability. If you’re new to my Substack, welcome. I have written often about younger-onset dementia, and you can find those articles by looking through my past posts. There are too many to list here.

Younger-onset dementia, or YOD, means dementia first experienced before the age of 65. I use ‘experienced’ deliberately, because symptoms often begin years before diagnosis.

People with YOD may be in their 40s, 50s or early 60s. They may still be working. Their partners may be trying to stay in paid work while caring. Some are still raising children. Some are paying rent or a mortgage. Many are years away from New Zealand Superannuation.

The harm can start before diagnosis, when symptoms are misread as stress, depression, burnout, relationship difficulty, menopause, substance use, or poor performance at work.

After diagnosis, people and whānau may need help with employment exit, loss of income, children and teenagers, relationship strain, transport, housing, debt, insurance, and support services that are not designed around frail older age.

Minister Costello appeared to understand that in September 2025 when she said dementia was not just an aged-care issue and that younger people may need different support.

But the later parliamentary answers have not shown a national age-appropriate and life-stage-appropriate YOD pathway. They have not shown ring-fenced YOD funding. They have not shown transparent tracking of what is spent on YOD. They have not shown a clear national response to employment exit and income loss. They have not shown that people with YOD can access age-appropriate services regardless of where they live.

Instead, the answers point to generic routes, local variation, needs assessment, GP referral, memory clinics, NGOs, aged-care settings, existing pilots and broader Health NZ funding.

Some of those things matter. Some help some people. But they do not amount to a national YOD pathway.

The accountability problem becomes sharper because, when YOD was raised directly in the House, Minister Costello said it did not sit specifically under her delegation. Yet she holds delegated responsibility for dementia management, had publicly received the refreshed Action Plan, had spoken at the September 2025 Summit about younger people with dementia needing different supports, and had answered parliamentary questions on YOD.

That is how younger-onset dementia can be named as a priority, then blurred across portfolios, and left without clear ownership.

In an earlier article I described the pattern this way: Young-onset Dementia is named, then blurred back into older-age systems. Its distinct needs are acknowledged in principle, but when direct action is demanded, the answer slides back into generic services, existing trials and the bigger aged-care picture.

That remains my concern.

A recognised priority population without funding, service design, tracking or accountability is not really being prioritised.

It is being recognised.

Recognition is not implementation.

The dementia community has already done the work

The refreshed Action Plan did not appear from nowhere.

Catherine Hall and Matthew Croucher’s podcast conversation is useful because it reminds us how long this work has been going on. Catherine traced the journey through international and New Zealand milestones, including the 2015 summit where the overwhelming view was that New Zealand needed a national plan. Matthew described the dementia community as having already identified the gaps and possible ways forward.

That matters because one of the easiest ways for governments to delay action is to suggest that the problem still needs more scoping, more discussion, more review or more evidence.

Of course, implementation details matter. Costings matter. Workforce matters. Prioritisation matters. But the basic direction is not unknown.

The Action Plans exist. The sector has done the work. The Kaitiaki have carried the work. People living with dementia, whānau, carers, clinicians, researchers, NGOs and providers have contributed to it. The MAG report has now also told Government to carefully consider the Action Plan.

That is why Alzheimers NZ’s recent public statement is useful too. It is not the same as the podcast. It is more current and more direct. In response to the MAG report, Alzheimers NZ said there can be no justification for further delay, welcomed the MAG’s endorsement of the Action Plan, and called for fair, appropriate and sustainable funding for community dementia services.

“We don’t need another dementia plan. We need to fund and implement the one we already have.”

Eileen Basher, Alzheimers NZ

That is the point. The dementia community does not need another round of acknowledgement. It needs services funded, the Plan implemented, and progress reported publicly. In other words, recognition is not implementation

Dementia still risks being overlooked this election

Alzheimers NZ has asked political parties five questions before the Political Panel.

Those questions ask whether parties will fund and deliver the priority actions in the Action Plan, whether they will provide fair and sustainable funding for community-based dementia services, what funded actions they will take on risk reduction and earlier intervention, how they will better support unpaid care partners, and what they will do to make sure dementia care does not fall through the cracks of mental health and aged-care reform.

Those are good questions.

When I last checked, Alzheimers NZ had started recording party answers, including answers from ACT and the Greens. Other responses may be added before or after publication, and the page should be checked for the latest version.

But the wider concern remains.

So far, I have not seen dementia break through as a major election commitment from any party.

That is not a smoking gun by itself. Election campaigns unfold unevenly. Parties release policies at different times. Health issues compete for attention.

But dementia has been waiting for years. It already has plans, evidence, sector agreement, lived-experience testimony, a refreshed Action Plan, a political panel, and now an aged-care advisory report that reinforces some of the same concerns.

If that still does not produce clear commitments, then dementia risks being treated once again as serious enough for sympathy, but not serious enough for election-level funding and implementation.

That is not good enough.

Dementia affects tens of thousands of New Zealanders now, 83,000 in 2025, and many more whānau, carers and supporters. It affects health, aged care, disability support, mental health, employment, income, housing, transport, palliative care, community services and unpaid care.

It is not only an aged-care issue.

It is not only a future issue.

It is not only a diagnosis issue.

It is a whole-system issue, and the dementia community has already provided a plan.

What I am asking readers to do

1. Register for and watch the Alzheimers NZ Political Panel on 1 September. Listen for clear commitments, not only sympathetic language.

2. Ask candidates and MPs whether their party will fund and implement the Dementia Mate Wareware Action Plan 2026–2031, not just recognise it.

3. Ask whether their party will publish an action-by-action implementation map, including lead agencies, funding, milestones, public reporting, and accountability for priority populations.

4. Ask whether their party will commit to fair and sustainable funding for community dementia services, including navigation, post-diagnostic support, respite, day programmes and carer support.

5. Ask what funded commitment their party will make for people with younger-onset dementia, their whānau and supporters, beyond saying YOD is a priority population.

6. Ask whether their party will support a national younger-onset dementia pathway covering pre-diagnosis, diagnosis, post-diagnostic support, navigation, employment and income disruption, respite, home support, residential care, palliative care and bereavement.

7. During World Alzheimer’s Month, join a local activity, donate, volunteer, or learn and share one new fact about dementia. People can join a local Memory Walk, take part in Move for Dementia, or support their local Alzheimers NZ or Dementia NZ organisation.

8. If my writing and advocacy are useful to you, please consider supporting the Younger Onset Dementia Aotearoa Trust, using the donation details at the end of this article.

The accountability test

Awareness matters. Diagnosis matters. Community action matters.

But this year, with an election just over two months away, awareness also needs to include political accountability.

The questions I am asking are not radical. They are basic accountability questions. If any party says it supports dementia mate wareware, it should be willing to say what it will fund, what it will implement, who will be responsible, and how progress will be reported.

The public record I have found does not show that from the current Government.

It shows acknowledgement, inherited pilots, existing programmes, future evaluation, and responsibility that becomes less clear when younger-onset dementia is raised directly.

Minister Costello may have had to persuade Cabinet colleagues. She may have been constrained by Budget rules, the Minister of Finance, competing priorities, or wider Coalition choices.

But she is the Minister with delegated responsibility for dementia management. She has publicly received the refreshed Dementia Mate Wareware Action Plan, spoken about younger people with dementia needing different supports, answered parliamentary questions on YOD, and then told the House that Young-onset Dementia did not sit specifically under her delegation.

That does not look like implementation. At this point, it barely looks like recognition.

If responsibility can be shifted between portfolios, Budget processes, Health NZ work programmes and future evaluations, then people with younger-onset dementia, their whānau and supporters are still being left in the gaps the Action Plan was meant to close.

Readers can draw their own conclusions from the record.

Mine is this:

Worse, when questioned in Parliament, both Prime Minister Christopher Luxon and Minister for Social Development and Employment Louise Upston denied that people's benefits had been cut.

Then, during the Estimates Debate this week, when Upston was pressed on the issue, she moved from ‘no’ to ‘possibly’. Shortly afterwards, she said her allocated speaking time was up and stopped answering questions.

We now know those denials were wrong. Some people's payments had been wrongly suspended even though they had provided MSD with the information requested. MSD says the volume of responses meant some were not processed before people's benefits expired.

Upston is now pointing to operational failures within MSD. But that raises a pretty basic question. Whatever happened to ministerial responsibility?

Of course Ministers do not personally process benefit payments. But they are responsible for the legislation and policy settings they oversee, and for holding their departments accountable when implementation goes wrong. Saying officials got it wrong cannot simply be the end of the matter.

The legislative history matters too.

The Social Security (Mandatory Reviews) Amendment Act 2025, which introduced these mandatory reviews, was rushed through under urgency without a select committee process. Its first and second readings were held on 22 May 2025, with the remaining stages completed in June. It came into force on 2 March 2026.

Then, just a year later, the Government went considerably further. The Social Security (Modernisation) Amendment Bill was introduced on 27 May 2026 and passed through its first reading, second reading, committee stage and third reading the very next day, 28 May, again without a select committee process. It became law on 4 June. Most provisions came into force on 1 July, with further provisions still to come into force.

Opposition MPs raised concerns about the risks of rushing significant changes to the welfare system. After what has now happened with the 2025 mandatory review changes, those warnings about the further 2026 changes deserve to be taken seriously.

Even if everyone affected has now been reimbursed, that does not make the problem disappear. For people living week to week, having an MSD payment wrongly suspended or delayed can mean food not bought, rent or bills not paid, and considerable unnecessary stress.

Legislation affecting vulnerable people's incomes needs careful scrutiny, proper implementation and accountability when things go wrong, not haste followed by blame-shifting.

Newly released documents provide important evidence about what Minister of Health Simeon Brown knew about Health NZ’s recruitment controls, what the public was being told, and what those controls may have meant for people relying on our public health system.

RNZ published an important investigation by Senior Reporter Ellen O’Dwyer on the morning of 19 August 2026. It provides new documentary evidence about Health NZ’s recruitment controls and what Minister of Health Simeon Brown knew about them.

The significance is not whether there was a literal freeze on every appointment. Health NZ continued hiring staff. The more important issue is whether recruitment was being deliberately constrained for financial reasons, including for frontline roles, while Ministers continued to reject claims of a hiring freeze.

On 5 March 2025, Brown told Parliament:

Yet in March 2025, Health NZ Commissioner Professor Lester Levy and interim chief executive Dr Dale Bramley briefed Brown that strict recruitment controls had been operating throughout 2024/25.

According to RNZ, recruitment of frontline staff required approval from a regional deputy chief executive. Recruitment pipelines were closely monitored, and an HR oversight group had been established.

Levy and Bramley also linked those controls directly to Health NZ’s financial position. They told Brown the controls were important to delivering Health NZ’s budget and were expected to remain throughout 2025/26.

That changes the context in which Brown’s subsequent public statements need to be considered.

What Brown knew by May 2025

By 6 May 2025, when Labour health spokesperson Doctor Ayesha Verrall asked Brown whether he still stood by his statement that there was no hiring freeze, he had already received the March briefing.

Brown responded by saying there were more doctors and nurses working for Health NZ than in 2023.

That was relevant to overall workforce numbers, but it did not address whether individual services could readily fill vacancies. A health workforce can be larger than it was two years earlier while replacement recruitment is simultaneously being delayed or restricted.

Brown and the Coalition Government repeatedly referred to around 2,000 or 2,100 more nurses. That figure also needs context.

Health NZ nursing FTE increased substantially during 2023 and into early 2024, during a recruitment expansion that began before the Coalition took office. By contrast, between March 2024 and March 2026, the net increase in Health NZ’s nursing workforce was reportedly only 54 FTE.

That figure was examined during Brown’s TVNZ Q+A interview with Jack Tame on Sunday 9 August 2026. Brown disputed the 54 FTE figure during the interview. Afterwards, Tame returned to the numbers, showing the sharp increase in nursing FTE towards the end of the previous Labour-led Government and during the Coalition Government’s first few months, before that growth largely stopped. Citing Health NZ’s official workforce dashboard, Tame concluded:

For those who want to watch the relevant exchange rather than the full interview, it begins at about 17:45, Brown disputes the 54 FTE figure from about 21:36, and that exchange concludes at about 23:30. Tame’s subsequent explanation of the workforce data comes at the end of the interview.

That does not mean only 54 nurses were recruited. Staff joined and left throughout that period. It does show that net nursing capacity changed very little over those two years.

Months before recruitment could even begin

Meanwhile, frontline health workers and their unions were reporting substantial recruitment delays.

RNZ gives examples of vacancies sitting for weeks or months before recruitment was even approved to begin. It reportedly took six months to gain approval to replace three neonatal intensive care nurses in Wellington, 12 weeks for a Northland radiologist vacancy, 19 weeks for an intensive care nurse, seven weeks for a Counties Manukau midwife, and 28 weeks for a sonologist vacancy.

Only after that approval could the normal recruitment process of advertising, interviewing, checking references and making an appointment begin.

That distinction matters.

These were not simply delays caused by shortages of suitable applicants or a slow recruitment market. A vacancy could be known, funded and clinically needed, yet weeks or months could pass before Health NZ authorised the service to begin looking for a replacement.

The PSA says 76 percent of 1,800 members surveyed reported their teams waiting more than a month for approval to fill vacancies. Eighty-five percent said unfilled roles contributed to staff stress and burnout.

Those reports now need to be considered alongside the internal briefing to Brown. They were not simply complaints about a difficult labour market. Health NZ’s own leadership had told the Minister that restrictive recruitment controls were operating and were part of its financial management.

What did this mean for patients?

The consequences for people using our public health system also matter.

Over 2025 and 2026, there have been repeated reports of overcrowded emergency departments, pressure on hospital beds, delayed treatment and staff warning about unsafe workloads.

Wellington Hospital’s emergency department reportedly reached its most serious ‘code red’ overload status hundreds of times during 2025.

On 30 June 2026, a man in his mid-50s died after waiting more than nine hours in Waikato Hospital’s emergency department. Health NZ’s initial review did not conclude that additional monitoring would have changed his outcome, so it would be wrong to attribute his death directly to recruitment controls.

But overcrowding, delayed access to care and insufficient staffing cannot simply be treated as unrelated to workforce policy.

When frontline vacancies can sit for weeks or months awaiting approval before recruitment even starts, the effects are experienced in clinical services. The existing workforce has to cover the gap throughout the approval period and then for however long the subsequent recruitment process takes.

That can mean fewer staff carrying the same workload, delayed rehabilitation, longer waits, greater pressure on remaining staff, and less resilience when demand increases.

What Health NZ and Brown acknowledged in 2025 and 2026

By December 2025, Health NZ’s senior leadership was acknowledging to Parliament’s Health Committee during Scrutiny Week that its financial difficulties had led to recruitment becoming centralised.

Then, in March 2026, Brown announced that hospitals would be able to recruit and deploy staff without central sign-off. He said this would reduce response times.

That sequence is important.

By March 2025, Brown knew strict recruitment controls were operating and that they included senior approval of frontline appointments.

By December 2025, Health NZ was publicly acknowledging that recruitment had become centralised.

By March 2026, Brown was removing central sign-off because it was slowing recruitment.

Against that record, the repeated statement that there was ‘no hiring freeze’ appears increasingly incomplete.

The stronger conclusion is not that Health NZ stopped hiring altogether. It is that Health NZ imposed deliberate, financially driven recruitment restraints, including on frontline recruitment, while Ministers continued to deny that a hiring freeze existed.

RNZ’s reporting provides documentary evidence of the system behind what frontline staff and unions had been describing for some time.

There are now questions that need answering

The remaining issue is accountability.

The public deserves a clear explanation of why these controls were imposed, how much they contributed to Health NZ meeting its financial targets, and what assessment was made of their effects on staffing levels and patient care.

There is also a question for the Minister of Health.

If Brown knew by March 2025 that strict recruitment controls were operating, including senior approval before frontline recruitment could even begin, why did he continue to respond to concerns about a ‘hiring freeze’ by pointing to overall workforce numbers rather than explaining the controls Health NZ had told him were in place?

Perhaps there was never a literal hiring freeze preventing Health NZ from employing anyone. Clearly there wasn’t.

But that increasingly looks like a distinction based on the narrowest possible definition of a ‘freeze’.

What RNZ has now revealed is more important: deliberate, financially driven controls over recruitment, including frontline recruitment, which the Minister of Health knew about while the Coalition Government continued rejecting claims of a hiring freeze.

Frontline health workers and their unions had been warning about recruitment delays and their effects throughout 2024, 2025 and into 2026.

We now have documentary evidence that helps explain what was happening behind those reports.

For people depending on our public health system, this was never simply an argument over terminology. It was about whether there were enough people available, in the right places and at the right time, to provide the care they needed.

That deserves much closer scrutiny.

Postscript – later on 19 August 2026

I wrote the first draft of this commentary this morning. The rest of my morning was taken up with a meeting advocating for Jacki, followed by an afternoon Zoom meeting as part of my wider independent young-onset dementia advocacy.

But I did spot one Parliamentary Oral Question on today’s list that I particularly wanted to see. Question No. 10 was from Hon Dr Ayesha Verrall to the Minister of Health:

Is it correct that the net increase in Health New Zealand full-time equivalent nursing staff between the quarters ending March 2024 and March 2026 is 54 full-time equivalents?

Simeon Brown’s initial response used essentially the same figures, date range and information he had chosen to use when questioned by Jack Tame on Q+A.

There was an important difference, however. This was a primary question on notice. The Minister and his office knew exactly what was being asked before Question Time.

After Brown finished his initial answer, Labour’s Kieran McAnulty raised a point of order:

‘This is a very similar circumstance that occurred previously with this exact same Minister: with a primary question on notice that gives a specific time frame, he deliberately chose not to answer that question and talked about something of his own choosing. The primary question on notice specifically asks between the period of “March 2024 and March 2026”, neither of which he responded to.’

There followed several points of order and supplementary questions as Verrall continued trying to obtain an answer to the specific question she had asked.

Eventually, the exchange became very simple:

Hon Dr Ayesha Verrall: Is the answer to my primary question ‘54’?

Hon Simeon Brown: Yes. [Interruption]

So we now have the Minister of Health himself confirming in Parliament on 19 August 2026 that the net increase in Health NZ nursing FTE between the March 2024 and March 2026 quarters was 54.

That is important context for Brown’s repeated references to around 2,000 or 2,100 additional nurses. It does not mean Health NZ employed only 54 new nurses during those two years. Nurses joined and left the workforce. It means that, measured in FTE, the net increase over the period Verrall specified was 54.

There was more to the exchange, and I recommend watching today’s Question Time if you can. The several minutes it took to obtain that one-word answer are revealing in themselves.

The following document was reportedly found by Parliament cleaners on the 9th floor of the Beehive, in the CEO bathroom, and passed to us by a source of a source whose name may or may not have started with Chris.

It was marked:

DRAFT SPEECH FOR NIKKI NO BOATS TO FIX THE BASICS

Kia ora, good morning, everyone. What I say to you is, I’m told it’s actually 12:45 in the afternoon. Look, I work incredibly long hours, I’m very delivery-focused, and knowing whether it’s morning or afternoon simply isn’t one of my KPIs. I can’t make it any clearer than that.

We’re running late because I sent Simeon ahead to make sure Tova or Jack hadn’t infiltrated the corridors, and security checked my loyal front-bench ministers had left behind what they say are their tools for driving expenditure restraint.

They looked a lot like sharpened knives to me.

But Erica said they’re a surprise gift, and, ‘We’ve got your back.’

Very reassuring.

As you know, this is an absolutely pivotal election with some very, very serious issues at stake for New Zealand, including, as it turned out this morning, who would be leading the National Party into it.

We’ve made tremendous progress. We got the economy growing again after making it smaller first. Unemployment has grown incredibly strongly. We’ve restored financial discipline with bigger deficits. Violent crime is down. School attendance is up. And where the numbers haven’t worked, we’ve got the targets, definitions and measurements into the right settings.

Healthcare is improving too.

A man waited more than nine hours in an emergency department and died in the toilet.

Under Labour, it would have been a 12-hour wait.

That’s laser-focused delivery.

And yes, hard-working New Zealanders are doing it tough. I get it. Sixty-dollar grocery shop. Marmite sandwich. Apple. Choices, discipline, personal responsibility, getting the settings right.

Especially the disabled, pensioners, beneficiaries, homeless, the working poor, and assorted bottom feeders.

Some of them just need to work a little harder, use Claude, get wealthy and sorted like me, and then they can be entitled to their entitlements.

I’m wealthy and sorted, obviously.

I get it.

But we have more to do. Our positive plan is about fixing the future and building the basics.

Fixing the basics and building the future.

Look, what I say to you is, the precise order isn’t important. What’s important is delivery. We are laser-focused on delivering the deliverables, and making sure those deliverables are delivered.

New Zealanders need to stop being negative, wet and whiny and be adults. Adult, adult, adult. We’ve identified the big rocks. We’ve chunked them down. We’re laser-focused on delivery. Assuming Winston doesn’t move the rocks, David doesn’t sell them, and the Defence Force has my personal plane or helicopter primed for me to spring into action and get to rock bottom with a box of KFC and a pav.

That’s how I roll. I’ve been a global CEO. I know what good looks like. I’m usually the first in the room to recognise it.

Sometimes the only one.

There was a confidence vote in my leadership this morning, and I have the full support of our caucus. Chris Penk had so much confidence in me he called a vote to check whether everybody else did too.

He is no longer a minister.

Adult-to-adult performance management.

That’s how I roll as CEO of New Zealand.

Our caucus is united. Nicola, Chris, Erica, Mark, the whole team, incredibly supportive. Chris the Bish even held the fire escape door open for me and whispered, ‘Don’t let the door hit you on the backside on the way out.’

Always so thoughtful. And planning ahead is Bish.

What I can tell you is, they’re loyal.

Very united. Very loyal.

Incredibly loyal, incredibly united, laser-focused.

And united.

As for the alleged coup plotters and sympathisers, there are none. Any yahoos or numpties involved have left the building.

We are completely united.

We held a secret ballot to prove it.

I can’t make it any clearer than that.

Our focus is National’s positive plan to fix the basics and build the future, so our kids and grandkids can do better than we can. They may need to wait for unemployment to fall, healthcare to improve, the books to return to surplus and the economy to finish rebuilding, but we’re getting the settings right and empowering and enabling them to get on with waiting.

That’s what this election is about.

Building the basics. Fixing the future.

Future-fixing the building basics.

Look, fundamentally, we’re fixing and building.

I’m entitled to my entitlements.

And New Zealanders are entitled to our deliverables.

I can’t make it any clearer than that.

With that, I want to say thanks, everyone. We’re going back to work, and we’re moving on.

Thank you very much.

Scribbled in the margin, in handwriting, was:

‘TO DO’:

1. Fire Chris.

2. Buy Amanda some flowers.

3. Book a lift with the Air Force to Hawaii via Te Puke.

Talking points: Fix future, build basics. Laser-focused. Positively adult, adult, adult. 100% Confidence, United and Loyal

Inspired by actual events, public statements and political theatre. The ‘leaked’ speech is, obviously, not actually leaked. It was given to us by an emotional junior staffer whose name may, or may not, have started with Chris. No Chrises were harmed in the writing of this satire. Yet.

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ACT’s latest welfare policy election announcement on Sunday 28 June 2026 is framed around fairness, personal responsibility, the value of work, and stopping welfare from becoming “a way of life”.

That sounds tidy, if you already accept the premise. From where I sit, as Jacki’s husband, primary family carer and supporter, and as a Young-onset Dementia advocate, the announcement exposes something much more troubling. It shows how easily serious illness, disability, caring, and forced early medical retirement can be pulled into a political story about dependency, suspicion, cost, and failed jobseeking.

Our story is not unique. That is the point.

Many families live in the messy space between health, disability, welfare, aged care, employment, residential care, carer support, and retirement policy. They are not there because they lack motivation. They are there because life has been upended by serious illness or disability, often long before the age of 65.

In my own situation, an activated EPOA is part of what allows me to deal with official matters, such a benefit reviews for Jacki. But it is only one part of a much larger reality. Caring is also advocacy, administration, emotional labour, practical support, decision-making, follow-up, grief, love, and constantly trying to hold together the many systems that now touch her life.

ACT’s policy would require all health and disability benefit medical certification to be issued by an MSD-approved pool of designated doctors. A person’s usual GP or specialist could still provide notes and supporting evidence, but the major certification decision would move away from the clinicians who often know the person’s medical and social history best. Existing Jobseeker Support Health Condition or Disability and Supported Living Payment recipients would be reassessed against new criteria. ACT says this would begin with mental-health-related grants made after the pandemic. It also proposes electronic money management for Jobseeker Support Work Ready recipients after four months.

ACT presents this as common sense. I do not.

I understand the public concern that welfare settings should have integrity. Public money should be used properly. People who can work should be supported into good work. Nobody should be casually written off by the state. But integrity must not become suspicion as the default setting for disabled people, seriously ill people, and carers. Nor should fiscal concern become a convenient way to narrow who is believed, who is supported, and who must keep proving their need.

Young-onset Dementia helps show why.

What I mean by Young-onset Dementia

Young-onset Dementia, also called Younger-onset Dementia or Early-onset Dementia, usually means dementia diagnosed before the age of 65. Different organisations use slightly different names and punctuation. I use Young-onset Dementia because it is the term I usually use in my advocacy.

Whatever name is used, it is not normal ageing. It is dementia arriving while people may still be working, parenting, paying a mortgage or renting a family home, supporting whānau, contributing to communities, and planning for a retirement they may never get to live. Approximately 6,800 people had Young-onset Dementia in 2025. That is approximately 8 percent of all people with dementia, or 83,000 people in 2025.

It is also not one single condition. Alzheimer’s disease can occur before 65, but so can frontotemporal dementia, Lewy body dementia, vascular dementia, alcohol-related brain damage, and other forms of progressive neurological disease. The symptoms may not begin with obvious memory loss. They may begin with changes in judgement, language, empathy, behaviour, motivation, planning, work performance, social conduct, emotional regulation, or insight.

This is where ACT’s language starts to fail. The announcement asks why New Zealand is “paying people to stay at home” when jobs are being filled by migrants. That sentence may work politically. It does not work clinically, morally, or in the lived reality of many disabled and seriously ill people.

People with Young-onset Dementia are often medically forced out of ordinary working life by a progressive, disabling and life-shortening brain disease. Some lose work before diagnosis because their symptoms are misunderstood as stress, burnout, depression, anxiety, poor performance, relationship problems, alcohol use, or personality change. Some are misdiagnosed for years. Some try desperately to keep working long after it is safe, sustainable, or fair to them, their employer, their colleagues, or their whānau.

A short independent assessment can therefore be risky. It may miss what family, friends, workmates, GPs, specialists and support workers have watched unfold over years.

ACT’s promise of “clear, objective criteria” sounds reassuring. Fair criteria do matter. But false objectivity is dangerous. A person with dementia may present well in a short appointment. They may speak fluently, smile, answer simple questions, and appear socially capable. They may also have impaired insight, poor judgement, executive dysfunction, language changes, behavioural symptoms, emotional distress, or an inability to manage the ordinary reliability, safety and complexity of paid work.

Frontotemporal dementia can be especially poorly understood. So can atypical Alzheimer’s disease, Lewy body dementia, and other progressive neurological conditions that do not fit the public stereotype of dementia as simply memory loss in old age.

A narrow checklist may look fair on paper while missing the reality of daily life. In dementia, the longitudinal story is not optional. It is often the evidence. The usual GP, specialist, neuropsychologist, whānau, carers, former employers, and support people must not be treated as background noise. Where an EPOA has been activated, that should also be recognised. But the wider point is about the person’s real life, not just a snapshot assessment.

A welfare policy built on suspicion

The deeper problem is not only the administrative detail. It is the way ACT’s announcement talks about people who need support.

The language is familiar. Welfare becomes dependency. Social protection becomes a taxpayer burden. People with health conditions become pressure points. Disabled people and carers disappear behind words like “gaming”, “incentives”, “work readiness”, and people being “paid to stay at home”.

I am not claiming every small-state or libertarian group says exactly the same thing, or that every policy comes from a single source. But this style of politics is familiar in New Zealand and overseas. Public services are described mainly as costs. Welfare is treated less as collective protection and more as a moral hazard. Fiscal restraint becomes a moral language. The taxpayer is highly visible. The disabled person is less visible. The carer is almost invisible.

Once that frame is accepted, the policy direction becomes easier to sell. More reassessment. More medical gatekeeping. More conditionality. More control over spending. More pressure to shift people off benefits. Less attention is paid to adequacy, rights, dignity, service failure, inaccessible work, delayed diagnosis, and the realities of serious illness.

This is not just a policy that accidentally forgets people with Young-onset Dementia. It is a policy shaped by a frame that struggles to recognise serious illness, disability and care as social realities requiring collective protection.

Rights are not luxuries

New Zealand’s social security system is not only a tool for pushing people toward work. It is also part of our social protection system. It sits alongside health services, disability support, aged care, housing, family support, and the wider idea that people should not be abandoned when illness, disability or caring responsibilities make ordinary paid work impossible.

Disabled people also have rights. The United Nations Convention on the Rights of Persons with Disabilities recognises disabled people as rights-bearing people, not simply as costs to be managed. Social protection, dignity, participation, autonomy, accessibility, supported decision-making, and inclusion are not optional extras.

Those rights are not met simply by saying support will remain for people with a “genuine, enduring disability or health condition”. That phrase sounds reassuring, but it does a lot of work. Who decides what is genuine? Who decides what is enduring? What happens when a person has a real progressive neurological condition but not yet the right diagnosis? What happens when their records say depression or anxiety because the health system missed dementia for years?

People with Young-onset Dementia often depend on others to help tell the story. That may include a partner, adult child, parent, sibling, friend, GP, neurologist, psychiatrist, geriatrician, neuropsychologist, social worker, care facility staff member, or former employer.

A fair process must recognise communication difficulties, impaired insight, privacy, natural justice, appeal rights, and the role of whānau, carers, supporters, and an activated EPOA where appropriate. It must also recognise that appeal rights are only meaningful if people have the capacity, support, time, money and emotional energy to use them.

For a person with dementia, and for their whānau, an appeal is not just a form. It may mean gathering records, asking specialists for letters, explaining symptoms again, challenging an assessment, managing deadlines, attending meetings, and absorbing the fear that income support could be reduced or removed.

The burden lands somewhere. Usually on the person already caring.

The unpaid care ACT does not count

ACT’s announcement talks about personal responsibility. But whose responsibility is being expanded?

In families living with Young-onset Dementia, responsibility is already everywhere. It is in the partner who notices the changes before anyone else believes them. It is in the adult child trying to understand why a parent is different. It is in the friend who keeps showing up. It is in the person trying to manage finances, health decisions, care arrangements, official letters, appointments, and the daily practicalities of life.

Caring is not only hands-on personal care. It is also the constant administration of another person’s life: Work and Income, IRD, Health NZ, GP appointments, residential care paperwork, subsidies, care plans, prescriptions, clothing, bills, transport, family updates and follow-up. No single task looks huge from the outside. Together they become a second unpaid job.

Reassessment is not neutral. It means more appointments, more forms, more evidence, more explaining, more fear, more waiting, and sometimes more appeals. For a household living with Young-onset Dementia, that is not a minor administrative inconvenience. It is another demand placed on whānau already trying to manage decline, grief, safety, finances, residential care decisions, health appointments, and the slow loss of the person they love.

There is a contradiction here. A policy that claims to value work may push carers out of work. If a partner has to attend more assessments, gather more evidence, manage more official processes, supervise more, care more, advocate more, and absorb more uncertainty, that partner may reduce paid work or leave work altogether. The state may then claim to have tightened benefit integrity while shifting the real cost to unpaid carers, employers, families, foodbanks, charities, GPs, specialists, emergency departments and residential care services.

That is not efficiency. It is cost shifting.

It is also one of the missing economic realities in ACT’s announcement. Unpaid carers are not a footnote to the welfare system. They are one of the reasons the health, disability, aged care and social support systems keep functioning at all. Carers NZ and Infometrics have estimated the economic value of unpaid care in New Zealand at $17.6 billion a year. Alzheimers NZ has reported that dementia care partners provide nearly 53 million hours of unpaid care each year, valued at $1.19 billion in 2020, and by 2025 this had risen to 62.5 million hours of unpaid care each year, valued at $1.7 billion.

Those figures matter because ACT is counting only one side of the ledger. It counts benefit expenditure, taxpayer cost, and the number of people receiving Jobseeker Support Health Condition or Disability or Supported Living Payment. It does not appear to count the unpaid family care that prevents higher costs to hospitals, residential care, mental health services, disability support, home support, foodbanks, charities and the wider state.

When ACT talks about restoring the value of work, it should also recognise the value of care. A policy that makes carers spend more time proving, appealing, explaining and navigating bureaucracy is not cost-free. It simply moves the cost from the government’s balance sheet onto whānau.

Supported Living Payment also needs careful attention. It is not only about people whose own health condition or disability restricts work. It can also be connected to caring responsibilities. If carers are caught by broad reassessment settings, then the policy reaches beyond the person with the diagnosis and into the lives of those holding the care system together.

The figures do not prove the story ACT tells

ACT uses real concerns and some real figures. Health-related benefit numbers have grown. Jobseeker Support Health Condition or Disability has increased. Supported Living Payment is a long-term payment for many people.

But those facts do not prove that people are gaming the system. They do not prove that serious illness is dependency. They do not prove that the answer is more suspicion, more reassessment, or more centralised control through MSD-approved medical gatekeeping.

They may point to other explanations as well: unmet need, delayed diagnosis, mental distress, chronic illness, disability discrimination in employment, inaccessible workplaces, poverty, underfunded services, and the failure to build a humane system for people whose bodies or brains no longer fit the labour market.

A closer look at various government reports shows a different framing than used in ACT’s policy announcement statement.

None of this proves there is no fraud. Fraud should be investigated where there is evidence. But it does show why rising health and disability benefit numbers should not be treated as proof that people are choosing dependency, being casually written off, or gaming the system.

The starting assumption matters. If politicians begin with the assumption that health-related benefit growth is mainly about dependency, they will design policies to reduce dependency. If they start with the wider evidence in the callout above, they might ask very different questions.

Why are so many people becoming too unwell to work? Why are workplaces still not accessible enough? Why is mental health support so hard to access? Why are people with progressive conditions forced through work-focused benefit systems? Why are carers financially punished? Why do people under 65 with dementia fall between health, disability, aged care, welfare and retirement policy?

ACT’s announcement does not seem interested in those questions. It moves quickly to tightening, reassessment, money management and the language of taxpayer confidence.

Young-onset Dementia already falls between systems

For Young-onset Dementia, the failures are already visible.

New Zealand has had a Dementia Mate Wareware Action Plan 2020 - 2025, but implementation and sustainable funding have not matched the scale of need. The refreshed Dementia Mate Wareware Action Plan 2026 - 2031’s lack of progress to date, including recent comments from Associate Health Minister and NZ First List MP Casey Costello, has also raised serious questions about whether we are getting a real action plan, with costs, owners, timeframes and accountability, or another statement of priorities without the machinery to make change happen.

Meanwhile, people under 65 with dementia continue to fall between systems. They are too young for age-based dementia assumptions, too disabled for ordinary employment, too often misdiagnosed, and too often pushed into benefit categories that were not designed around progressive neurocognitive disease.

The Social Security (Modernisation) Amendment Act also matters here, because Jobseeker Support Health Condition or Disability and Supported Living Payment sit inside the wider social security framework. Changes to that framework are not abstract. They shape who is believed, who must keep proving need, whose partner income counts, who gets support, who is sanctioned, and who is forced through processes they may not have the capacity to navigate.

The wider disability support direction also matters. Disabled people, carers and whānau are already facing policy change, fiscal constraint, tighter language, and questions about what support the state is willing to recognise. For people with Young-onset Dementia, the danger is being invisible in every system at once.

They may be not old enough for retirement, not well enough for work, not always recognised as disabled, not well served by mental health pathways, not always included in dementia planning, not protected well enough by income support, and not supported properly as a whānau.

That is the policy gap ACT’s announcement walks straight past.

Early medical retirement, not endless reassessment

Early medical retirement keeps coming back into view because the current categories do not fit.

For people under 65 with confirmed progressive, disabling and life-shortening conditions, including Young-onset Dementia, Motor Neurone Disease and other serious illnesses, we should not be pretending the main policy question is work activation. The better question is how to provide income security, dignity, whānau stability, and time to live as well as possible.

That should include long-term recognition after confirmed diagnosis. It should include no repeated work-capacity reassessment for progressive dementia. It should include proper weight to treating clinicians and whānau evidence. It should include supported decision-making, accessible communication, carer support, and serious reform of partner income settings. Where an EPOA is activated, official systems should recognise and work with that reality rather than making everything harder.

It should include a proper conversation about early medical retirement before 65, not another round of suspicion dressed up as welfare integrity.

There is no dignity in forcing a person with a progressive brain disease to keep proving they are still declining. There is no fairness in making a partner or whānau carer repeatedly prove what the health system already knows. There is no integrity in a system that counts benefit savings but not carer breakdown, delayed diagnosis, GP time, specialist time, foodbank use, housing stress, family poverty, emergency care, and residential care crisis.

David Seymour and ACT say they do not want people written off. Neither do I.

But people with serious illness are also written off when their reality is forced into the wrong political story. They are written off when progressive disability is treated as failed jobseeking. They are written off when carers are treated as invisible. They are written off when dignity is replaced by repeated proof. They are written off when a system built around work-readiness cannot recognise that some people are not unemployed.

They are ill. They are disabled. Some are dying earlier than they should. Their whānau are trying to hold life together.

I usually end these types of articles with a call to action, such as writing to your MP, asking questions of candidates at local election meetings, or sharing the issue with others.

For this article, I have instead drafted an open letter to David Seymour. What makes ACT’s policy even more remarkable is that it comes not only from the leader of the ACT Party, but from New Zealand’s Deputy Prime Minister.

I have not sent the letter yet, but I am seriously considering doing so. It would be stronger, though, if more people who share these concerns were willing to add their names.

Minister Louise Upston’s Facebook video on the Disability Support Services Bill did not feel like an explanation of the Bill. It felt like damage control. Not because I expect a Minister to criticise her own legislation. Of course I do not. Ministers defend their Bills. That is politics. But this was not simply a Minister explaining a difficult Bill to the public. It was a carefully framed reassurance message, aimed at making deep and widespread concern sound like confusion, overreaction, or ‘misinformation’.

The video told people there has been “wildly inaccurate information” about the Bill. It said the Bill “doesn’t change anything” for disabled people today. It said eligibility does not change, support packages do not change, carers do not lose what they currently receive, and means testing is not being introduced. It said ministerial programmes will be renamed support programmes, that these programmes will be secondary legislation, and that the Bill will make the system fair, clear, consistent, certain and transparent.

If you have not read the Bill, followed the first reading debate, looked at the Regulatory Impact Statement and at the Departmental Disclosure Statement, made a submission, listened to oral submissions, or read written submissions from disabled people, whānau, family carers, legal bodies, watchdogs, providers, unions, health organisations and disability organisations, that may sound sensible. It sounds calm. It sounds practical. It sounds like a Minister tidying up a messy system.

But I am not reassured.

I am not reassured because the

Minister’s video does not answer the strongest criticisms of the Bill. It answers a narrower and softer version of them. It asks the public to focus on one question: will someone’s current support package change the day after the Bill passes? But that is not the real question. The real question is: what kind of disability support system is this Bill putting into law?

That is where the reassurance starts to fall apart.

Note to readers:

Last night, around the time I finished polishing the final draft that became this article, Dr Bex Graham published her own excellent article on Minister Upston’s Facebook video. I recommend reading it.

Dr Bex on Social Issues in Aotearoa NZ

Legislation must embed disabled peoples rights

A week of incredible submissions by disabled people. But is the Minister listening…

Read more

2 months ago · 13 likes · 3 comments · Dr Bex

Bex and I seem to be on the same page in our criticism of the video, but she includes useful links and raises additional points I have not covered here. Reading both pieces will give a fuller view of the Disability Support Services Bill process, how Government MPs are trying to shape the narrative around it, and why the disability community is rejecting that narrative.

I do not oppose a legal framework for DSS

To be clear, I do not oppose the idea of Disability Support Services having a proper legislative framework. In fact, I think a proper framework is needed. Disabled people and their whānau should not have to rely on unclear operational rules, inconsistent regional practices, sudden administrative decisions, or funding policies that can change with little warning. A clear legal framework could improve transparency, accountability, consistency, appeal rights and fairness.

But only if it is the right framework.

This Bill is not the right framework.

That distinction matters, because the Government keeps arguing as if the choice is between this Bill and no framework at all. That is not true. Many submitters are not saying, ‘do nothing’. They are saying, ‘do not pass this Bill in this form’. That is very different.

A good DSS law would start with disabled people’s rights, dignity, choice and control. It would recognise that disabled people have the right to determine their own lives, not merely receive services designed by Ministers, officials, agencies or providers. It would place the United Nations Convention on the Rights of Persons with Disabilities at the centre. It would be grounded in Enabling Good Lives principles in a way that allows those people living with disabilities to control decisions about themselves, rather than leaving them as warm words.

That matters here because the Disability Support Services Bill should be tested against those ideas. Does it shift power towards disabled people and whānau, or upwards to Ministers, support programmes and future rules? Does it strengthen self-determination, or make disabled people more dependent on political discretion and later decisions? Does it make the system easier to use, or ask people to trust a legal framework before the safeguards are clear?

It would include proper safeguards, review rights, appeal rights, complaints processes, information rights, supported decision making and independent advocacy from the beginning. It would be co-designed with disabled people, tāngata whaikaha Māori, whānau, family carers, providers and representative organisations. It would take seriously the disability community principle of ‘nothing about us without us’.

It would not ask Parliament to approve the power first and wait for the protections later.

That is my central problem with this Bill.

“Nothing changes today” is not enough

The Minister’s main line is that nothing changes for anyone today. That may be partly true in a narrow operational sense. A person may not wake up the morning after the Bill passes and immediately lose their current DSS allocation. Existing eligibility settings may not instantly vanish. A broad new means test may not begin on day one.

But a narrow truth can still mislead if it avoids the bigger legal reality.

The Bill is not only about what happens the day after it passes. It is about what powers are created, what principles are embedded, what protections are left out, and what future Ministers can do through support programmes and secondary legislation. The law being passed today gives Ministers the tools to change tomorrow. That is why “nothing changes today” is not enough.

The Bill does much more than tidy up current arrangements. It creates an authorising framework for DSS. It frames public support as a contribution from available public funding. It places family and whānau responsibility inside the statutory scheme. It gives the Minister power to make support programmes. It responds to paid family care litigation. It deals with the Crown’s position on whether it is, or was ever intended to be, the employer of family carers. It creates a transition period. It leaves many crucial safeguards and details for later.

That is not nothing. That is the machinery of a future system.

The submissions are not ‘misinformation’

This is why I object so strongly to the Minister’s framing of concern as “wildly inaccurate information”. Yes, in any public debate some claims can become overstated, especially when legislation is rushed, complex, poorly explained and directly affects people’s lives. But the serious opposition to this Bill is not based on wild talk. It is coming from disabled people, whānau, family carers, disability organisations, providers, legal bodies, unions, health organisations, public law experts, and watchdogs.

There have been hundreds, and possibly far more, submissions on this Bill. I have yet to find a single one that supports the Bill in its entirety. Many accept that a proper legal framework for Disability Support Services may be needed, but that is very different from supporting this Bill.

If this is all ‘misinformation’, then the Minister may want to explain whether she believes the Human Rights Commission, the Office of the Ombudsman, the Legislation Design and Advisory Committee, the New Zealand Law Society, The Law Association of New Zealand, Aotearoa Disability Law, the Disabled People’s Organisations Coalition, Disabled Persons Assembly NZ, CCS Disability Action, IHC, Carers NZ, the New Zealand Council of Trade Unions, the Public Service Association, the Public Health Association of New Zealand, the Royal Australian and New Zealand College of Psychiatrists, and Te Ao Mārama Aotearoa Trust, plus other very knowledgeable submitters have all misunderstood what the Bill does, and what it risks.

Across the submissions, there appears to be strong agreement on one central point: while a proper legal framework for Disability Support Services may be needed, this Bill should not proceed in its current form. Many submitters call for it to be withdrawn, rejected, or substantially rewritten through genuine consultation and co-design with disabled people, tāngata whaikaha Māori, whānau, carers, providers, and representative organisations.

The concerns are not minor drafting issues. Submitters raise human rights, Te Tiriti o Waitangi, the UNCRPD, the New Zealand Bill of Rights Act, rule of law concerns, ministerial discretion, secondary legislation, inadequate safeguards, risks to family carers, the shifting of responsibility from the state onto families, and the rushed process that has not allowed proper scrutiny or accessible participation.

That is not a community failing to understand the Minister’s intent. It is a community, and many experts around it, reading the Bill and seeing what it actually allows.

The funding figure does not answer the Bill

The Minister and some Coalition MPs have also repeatedly pointed to large DSS funding figures, including Budget 2026 figures, as if this somehow answers criticism of the Bill.

It does not.

This was not only in the Minister’s video. During oral submissions, Joseph Mooney, Chair of the Social Services and Community Committee, repeatedly raised the Government’s large DSS funding figures at the end of individual submissions. In my view, these were often framed as questions, but sounded more like Coalition talking point statements. Other Coalition MPs on the Committee, also seemed to return to the same political framing: look at the money being spent, therefore the Bill is reasonable, responsible, or misunderstood.

That is a political tactic. It may sound persuasive to members of the public who have not read the Bill, the Regulatory Impact Statement, or the submissions. But it does not answer the substance of the concerns being raised by disabled people, whānau, family carers, disability organisations, legal bodies, government watchdogs, providers, unions and health organisations.

Of course Disability Support Services need proper funding. No serious submitter is saying otherwise. Disabled people, whānau, family carers, providers and advocates know better than most how much pressure the system is already under. But using a large total funding figure as a political shield is misleading, especially when that figure is spread across years, demand growth, inflation, residential care, existing services, cost pressures, past underspending and system stabilisation.

It is also misleading when the public is not told clearly how much of the so-called ‘record investment’ is genuinely new money, how much is catch-up funding for existing demand, and how much may simply be money returning to the system after supports were restricted and underspent.

That matters because Whaikaha changed the purchasing rules in March 2024 for flexible funding, including Carer Support. Those changes reduced what some people could practically claim or use support funding for. Disability advocates have since pointed out that part of the Budget 2026 DSS uplift appears to be an expense transfer of underspent funds from the flexible funding pause. In plain English, that raises a serious question: is part of the ‘record spend’ actually money that should have supported disabled people, whānau and carers earlier, but did not?

If the Minister wants to use headline funding figures to justify the Bill, she should answer that directly. How much of the claimed increase is genuinely new investment? How much is meeting demand and cost pressure? How much is residential care pressure? How much is carried over from underspending? How much is connected to the two years in which Carer Support and other flexible funding rules were restricted?

A headline number may sound good to the general public. It may let a Minister or a select committee chair suggest the Government is being generous, responsible, or misunderstood. But it does not answer what the Bill actually puts into law. It does not answer the human rights concerns. It does not answer Te Tiriti concerns. It does not answer the UNCRPD concerns. It does not answer the New Zealand Bill of Rights Act concerns. It does not answer the rule of law concerns. It does not explain why so much power is being left to Ministers and secondary legislation. It does not explain why safeguards, complaints, appeals and information rights are being left for a later phase. It does not answer the family carer provisions. It does not answer the concern that responsibility is being shifted from the state onto families and whānau.

Funding matters. But funding does not make a flawed legal framework rights-based, safe, or accountable. A Government can spend billions and still pass bad law. So when Ministers and Coalition MPs respond to legal, rights-based and lived experience concerns by pointing to a large Budget number, they are not answering the criticism. They are changing the subject.

The factsheet and FAQ are part of the reassurance campaign

The Minister’s video sits alongside the DSS factsheet and FAQs. In my opinion, those documents should not be treated as neutral explanations of the Bill. They are part of the same Government communications strategy.

They repeatedly tell people what does not change immediately. Current supports do not change. Current eligibility does not change. Current family obligations do not change. Current means testing arrangements do not change. That framing is useful for the Minister because it narrows the debate to day one impacts. But the legal question is wider than that.

The factsheet and FAQ do not fully engage with what is actually in the Bill. They do not properly explain the policy choices behind it. They do not answer why so many disabled people, family carers, lawyers, providers, advocates and watchdogs are worried. They take the Government’s position and make it sound safe.

That does not mean they say nothing useful. Sometimes they are useful because they confirm parts of the Government’s approach. They confirm this is a first step. They confirm more change will come later. They confirm support programmes will do important work. They confirm the Bill responds to paid family care litigation. But they do not answer the disability community’s critique. They are part of the very reassurance campaign being challenged.

The people expected to carry the risk are already carrying too much

The legal architecture of this Bill matters because it lands in real lives, not in a policy vacuum. Many disabled people are already living in poverty, or close to it. Many are on fixed incomes. Many face higher costs because of disability, health conditions, transport needs, equipment, housing, food, heating, medication, care, communication, or the basic cost of making ordinary life accessible.

Many also have limited opportunities to get sustainable, well-paid work. That is not because people lack ambition or ability. It is because inaccessible workplaces, discrimination, fluctuating health, transport barriers, support gaps, caring responsibilities and system complexity all limit what is realistically possible. For some people, even when paid work is possible, the support needed to get there and stay there is fragile, underfunded, unavailable, or administratively exhausting.

Family carers are often under the same pressure. Many reduce paid work, leave jobs, damage careers, lose income, lose retirement savings, and carry the emotional, physical and financial load of care. Some do this for years. Some do it with little respite. Some do it while also trying to manage their own health, housing, bills, grief, exhaustion and isolation.

Figure 1 State of Carers 2025/26 Infographic.

Source: Carers NZ, 2026. State of Caring Survey – 2025-26 update, retrieved from https://carers.net.nz/state-of-caring-survey-2024/, on 28/6/2026

That is the context in which this Bill talks about available public funding, family and whānau responsibility, and future support programmes. Unmet need does not disappear because a law calls public support a contribution. It lands somewhere. It lands on disabled people. It lands on whānau. It lands on family carers. It lands as isolation, lost work, poverty, stress, burnout, unsafe care, reduced independence and less participation in ordinary life.

So when the Minister reassures people that nothing changes today, she is speaking into a community where many people are already at breaking point. For them, future risk is not theoretical. A shift in rules, an unclear support programme, a narrower interpretation of family responsibility, or a delay in accessing support can be the thing that tips a fragile life into crisis.

That is why people are worried.

The legal architecture matters

The most important parts of the Bill are not the comforting words in the video. They are the legal architecture.

The Bill frames DSS support as a contribution within available public funding. Of course public funding is finite. Every government must make choices. But when support is framed mainly as a limited contribution, disabled people are entitled to ask what happens when their assessed need is greater than the contribution offered. They are also entitled to ask whether this language will make it easier for future Ministers and officials to normalise unmet need as a budget management problem rather than a rights, dignity and participation problem.

The Bill also includes family and whānau responsibility in the statutory framework. The Minister can point to the phrase “where appropriate”, and yes, that phrase matters. But anyone who has dealt with support systems knows how language like this can work in practice. Family support can be loving, wanted and important. It can also be assumed, stretched, underpaid, unpaid, unsafe, gendered, unsustainable and used as a reason not to fund formal support.

That is why disabled people and carers are worried. Not because they hate family. Because they know what happens when the State quietly treats family as the first service provider.

The family carer provisions are not a small side issue. This Bill is not just a tidy administrative framework. It is also a response to successful paid family care litigation. It clarifies the Crown’s position. It deals with employment relationships. It validates some arrangements. It creates a transition. It protects the Crown from risks the Government clearly wants managed.

For family carers, that is not abstract law. It is about whether the work they do is recognised. It is about whether they have employment protections. It is about whether intensive care is treated as real work or just family duty. It is about whether the State can rely on family carers and then deny the legal consequences of that reliance.

The Minister points to a future carer support package. I genuinely hope that produces something useful. But I took part in the Carers Strategy Rolling Action Plan Strategy, and I put in my submission by the March 2026 deadline, then wrote about it here:

Family carers need better support, better respite, better recognition, better financial security and better planning for what happens when they can no longer keep going. But a promised future package does not answer what the Bill does now.

If the Government wants family carers to trust a new package, then publish it. Fund it. Consult properly on it. Show what it will replace. Show who will qualify. Show what rights carers will have. Show what happens if the package is not enough. Do not ask carers to accept legal changes now because something better may arrive later.

The three year transition creates uncertainty, not certainty

The Minister says the whole DSS system will be documented in support programmes over the next three years. That is not automatically reassuring. It may mean disabled people and carers are being asked to accept a legal framework now while much of the real content is still unknown.

Three years is a long time when you are caring every day. Three years is a long time when you need respite now. Three years is a long time when a disabled person’s life is already being shaped by assessment decisions, funding rules, provider shortages, transport barriers and family capacity.

The Government may call this a transition. But transition to what? What exactly will be in the support programmes? What will be consulted on? What will already be decided by the time consultation happens? What safeguards will be in the Act itself? What rights will disabled people have if they disagree? What appeal processes will exist? What happens to people whose current arrangements are legally protected for now, but not after the transition?

The Minister says the Bill creates certainty. I see a lot of uncertainty being pushed into the future.

Secondary legislation is not the same as protection

The Minister presents support programmes being secondary legislation as a safeguard. There is some truth in that. Secondary legislation is more formal than an unpublished operational guideline. It can be published. It can be scrutinised. In theory, Parliament can disallow it.

But secondary legislation is still delegated law. It is not the same as primary legislation. It does not go through the same full parliamentary process each time. It does not normally involve the same level of public submissions, select committee scrutiny and political testing. Parliament can disallow secondary legislation, but that is rare and politically dependent.

The question is not whether support programmes are better than secret internal rules. The question is why so much of the real DSS system is being left to later instruments instead of putting core rights, limits, consultation duties, safeguards and appeal rights in the Act itself.

The Minister talks as if secondary legislation is mainly a protection. It can also be a way of moving important decisions away from the full primary legislation process. Both things can be true.

“No means testing” is too narrow

The Minister says the Bill does not introduce means testing. Again, that may be true in a narrow day one sense. But it does not answer the deeper concern.

If the Bill allows income based and asset based criteria to be part of future DSS policy settings, then disabled people are entitled to ask why that power is there, how it can be used, what supports it can apply to, and what protections stop a future Minister expanding it.

A Minister saying “we have no intention” is not the same as a statutory protection. Intentions change. Ministers change. Governments change. Fiscal conditions change. If the Government does not intend income and asset criteria to restrict core disability supports, it should say so clearly in the Bill. People should not have to rely on political reassurance.

Assessment consistency is not the same as actual support

The Minister also talks about Needs Assessment and Service Coordination. She says assessment is now more consistent no matter where someone lives. That may be a process improvement, but it does not solve the real postcode lottery.

A consistent needs assessment does not create services where no services exist. It does not create support workers. It does not create respite beds. It does not create accessible housing. It does not create local transport. It does not create culturally appropriate support. It does not create age appropriate services for people with Young-onset Dementia. It does not create specialist behaviour support. It does not fix rural gaps. It does not make providers available in communities where they are not commissioned, not staffed, or not funded.

A person can be consistently assessed as needing support and still not receive it because the support is unavailable, waitlisted, underfunded, or not appropriate. That is not a small distinction. It is the difference between a tidy gateway and actual support on the other side of the gate.

Consistency is not automatically fairness. A system can consistently meet need. It can also consistently ration.

DSS is not the whole disability and support system

The Minister is speaking from a DSS funded disability support perspective. That matters. But many people do not live neatly inside one funding stream.

Some people are in DSS. Some, like most people living with Young-onset Dementia, are in Health New Zealand funded home and community support. Some are in aged care. Some are in chronic health pathways. Some are treated as ‘close in interest’ to older people. Some are in residential care. Some rely on ACC. Some rely on Work and Income. Some are carers trying to navigate several systems at once.

My own lived experience is mainly through Young-onset Dementia, health services, NASC, aged residential care, carer responsibilities, legal capacity, EPOA, income support and the gaps between systems. I do not pretend that is the same as every disabled person’s DSS experience. But it has taught me something important.

Systems do not harm people only inside tidy policy categories. They harm people at the boundaries. They harm people when one agency says, ‘not us’. They harm people when the law assumes a clean line between disability, health, aged care, injury, income support, family care and residential care.

People’s lives are not organised that way.

So when a Minister talks as if DSS reform solves disability support, I listen for what is missing. Health New Zealand funded supports are missing. ACC is missing. Aged care is missing. Dementia is missing. The ‘close in interest’ group is missing. The boundaries are missing.

That matters because this Bill may be about DSS, but the model it creates could shape wider thinking about public support, family responsibility, funding limits and administrative control.

This Bill sits inside a wider pattern

The DSS Bill is not happening in isolation.

We have also seen the Social Security (Modernisation) Amendment Act passed under urgency. The Government presents that kind of legislation as efficiency, modernisation and better administration. But for disabled people, carers and beneficiaries, those words can mean something else: more reviews, more proof, more medical evidence, more deadlines, more automated decision making, more suspension and cancellation risks, and more administrative burden.

We have also seen changes to the Total Mobility Scheme. For many people who cannot use public transport because of disability, transport is not a luxury. It is how they participate in ordinary life. Reducing support for transport means fewer trips, fewer choices, more isolation, and more pressure on family and carers.

We have also seen the disability support system itself destabilised by the March 2024 changes to purchasing rules, including Carer Support. For disabled people, whānau and carers who relied on flexible support, those changes were not abstract administrative tidy ups. They changed what people could use funding for, how they could sustain care, and how much practical support they could access.

These are not the same law, and they should not be collapsed into one. But people experience them together. That is why the language matters.

Modernisation. Sustainability. Consistency. Fairness. Contribution. Review. Support package. Available funding.

On paper these words can sound neutral, even positive. In real life they can mean more gatekeeping, more rationing, more evidence gathering, more waiting, more family responsibility and less practical certainty.

Disabled people and carers are not paranoid for noticing the pattern. They are paying attention.

The drafting process is part of the problem

The Minister talks about consultation as if engagement about what is wrong with DSS is the same as consultation on this Bill. It is not.

Disabled people and carers have indeed been saying the system is not working. They have asked for clarity, consistency, transparency and fairness. They have asked for better respite, better support, better assessment, better information and less arbitrary decision making. But being consulted about system problems is not the same as co-designing the legislative solution.

That distinction matters. A Government cannot listen to people describe harm, then draft a Bill that concentrates Ministerial power, leaves safeguards for later, manages Crown litigation risk, and embeds family responsibility, then say, “we listened.”

Listening is not the same as doing what is needed. Consultation is not the same as co-design. A rushed select committee process is not the same as proper policy development before a Bill is introduced. And ‘nothing about us without us’ is not a decorative phrase. It is a core disability rights principle. Disabled people are not just stakeholders in this law. They are the people whose lives, choices, support, relationships, safety and futures are directly affected by it.

People were given five minutes to speak on legislation that may shape the future of disability support in Aotearoa New Zealand. Major organisations had five minutes. Disabled people and carers had five minutes. People with lived experience were expected to compress years of harm, expertise, fear and legal concern into a tiny slot, while the Minister posts on Facebook and tells the public the problem is “wildly inaccurate information.”

That is not respectful lawmaking.

What Upston’s video and Coalition questions do politically

This is why I call the video damage control. Not because it contains no true statements. Damage control often uses true statements. The problem is how those statements are selected, arranged and repeated.

The video narrows the issue to reassurance: nothing changes today, current supports remain, carers will be supported, and the system will be clearer. But it does not answer the harder question of why this Bill gives so much future power to Ministers and support programmes while leaving key rights, safeguards, appeal pathways and co-design duties too weak.

A similar pattern appeared in parts of the oral submission process. In my view, when Joseph Mooney and other Coalition MPs repeatedly returned to funding figures and Government talking points at the end of submitters’ evidence, they were reframing serious legal and lived experience concerns back onto safer political ground.

That matters. Submitters had only five minutes, including time for questions. When those limited minutes are used by MPs to restate talking points about record investment, fairness, consistency or sustainability, it can crowd out genuine scrutiny of what submitters are actually saying.

That is not a full explanation. It is a political defence.

What should happen now

If the Government genuinely wants a strong DSS framework, it should stop pretending the disability community has simply misunderstood. It should listen to the submissions. It should amend the Bill substantially, or withdraw it and redraft it properly.

A better Bill would start with disabled people’s rights, dignity, choice and control. It would include enforceable safeguards from the beginning. It would limit Ministerial discretion. It would include strong consultation and co-design duties. It would protect against family and whānau responsibility being used as a substitute for public support. It would recognise family carers without narrowing legal rights before a future package is known.

It would include proper review, appeal, complaint and advocacy rights. It would make sure support programmes cannot quietly become the place where the most important decisions are made with the least democratic scrutiny. It would be clear about income and asset criteria. It would recognise that assessment consistency is not enough without actual services. And it would be developed with the people most affected.

That should not be too much to ask.

My final view

I do not think disabled people, family carers, whānau and advocates are frightened because they failed to understand the Minister’s reassurance. Many are frightened because they understood the Bill.

They understood the shift towards available funding. They understood the family responsibility language. They understood the support programme powers. They understood the secondary legislation issue. They understood the family carer implications. They understood the lack of proper co-design. They understood the three year uncertainty. They understood the wider pattern of reviews, administrative control, transport cuts, restricted flexible funding, underspending, and support systems becoming harder to navigate.

They also understand something deeper. Disabled people have the right to determine their own lives. Family carers should not be treated as an invisible shock absorber for system failure. Whānau, right down to first cousins, should not be expected to carry unmet need because the State has written itself a more flexible legal framework.

That is why the Minister’s video does not reassure me. It may reassure people who have not read the Bill. It may reassure people who do not live inside these systems. It may reassure people who hear “nothing changes today” and think that is the end of the matter. It may reassure people who hear a large Budget figure and assume that spending more money must mean the law is safe.

But it is not the end of the matter.

This Bill is not only about today. It is about the legal framework for tomorrow. If the law being passed today gives Ministers the tools to change tomorrow, then disabled people, family carers, whānau and supporters are right to ask hard questions now.

That is not wild talk.

That is democracy. That is accountability. And it is exactly what the Minister’s video failed to answer.
What you can do

If this Bill concerns you, please do not assume someone else will speak up.

Write to your local MP. Ask them whether they have read the submissions, whether they accept the concerns raised by disabled people and their representative organisations, and whether they will support the Bill proceeding in its current form. Their email addresses and other contact details can be found on the Members of Parliament list.

Write to Minister Louise Upston. Ask her to answer the substance of the concerns, not simply repeat that people have been misinformed or that nothing changes today.

Attend a meeting. If there are electorate meetings, public meetings, or candidate meetings in your area, ask direct questions about the Disability Support Services Bill, disability rights, Te Tiriti, the UNCRPD, family carers, and whether disabled people should have enforceable rights and safeguards in primary legislation.

Sign a petition. You can also sign Victoria Coleman’s Action Station petition calling for the Bill to be stopped. At time of writing it had over 15,000 signatures. And if you can be in Wellington, there is a petition handover at Parliament on Thursday 2 July 2026. The gathering is at Parliament House from 12.30 pm to 3 pm (grounds are available from Noon), with speeches and the petition handover expected between 1 pm and 2 pm.

Most people did not have the time, energy, or parliamentary obsession needed to follow the Social Security (Modernisation) Amendment Bill as it was pushed through Parliament under urgency.

That is part of the problem.

This was not a small technical correction. It was a 122-page Bill amending the Social Security Act 2018 and the Social Security Regulations 2018. It dealt with automated decision-making, mandatory reviews, medical evidence, medical examinations, suspension and cancellation, and rules affecting caregivers when a dependent child turns 18.

It went through all stages under urgency.

That meant no select committee process. No public submissions. No normal opportunity for disabled people, carers, whānau, beneficiary advocates, dementia organisations, Māori, Pacific communities, community providers, legal experts, health professionals, or people reliant on MSD support to tell Parliament what this Bill could mean in practice.

This first article is about what the debate revealed. A second article will look more closely at what this Act may mean in practice for disabled people, people with dementia, carers, whānau, people with disabling chronic illnesses, and others reliant on MSD support.

The Government called the Bill modernisation.

The debate showed something more troubling: a shift in welfare power, passed under urgency, with affected communities shut out of the lawmaking process.

That is why administration is not neutral. A letter, a deadline, a medical certificate, a review, or an automated process can become the point where legal entitlement turns into practical loss of support.

This Bill matters because it strengthens the machinery on the MSD side of that welfare power imbalance. It broadens automated decision-making. It formalises medical evidence processes. It enables MSD-directed medical examinations in some circumstances. It expands mandatory review settings. It creates pathways where non-response can lead to suspension or cancellation.

That is why the Government’s repeated reassurance, that the Bill does not change entitlement settings, only answers part of the concern.

The deeper question is not only whether formal entitlement changes. It is whether practical access becomes harder, more automated, more compliance-driven, and more risky for people already least able to absorb system failure.

The Government’s frame: modernisation

The Social Security (Modernisation) Amendment Bill belonged to Louise Upston, National MP for Taupō and Leader of the House, with several Ministerial Portfolios: Social Development and Employment; Child Poverty Reduction; Community and Voluntary Sector; Disability Issues; and Tourism and Hospitality. In other words a senior minister with several important portfolios in the Coalition Government. This Bill was introduced under her Minister for Social Development and Employment portfolio. The early explanation, however, was carried by other Ministers. Scott Simpson, National MP for Coromandel, Deputy Leader of the House, Minister of ACC, and Minister of Statistics, presented the legislative statement and moved the first reading on Upston’s behalf. Cameron Brewer, National MP for Upper Harbour and Minister of Commerce and Consumer Affairs, Minister of Small Business and Manufacturing, and Associate Minister of Immigration moved the second reading on her behalf.

That is not automatically improper. Ministers can move legislation on behalf of another Minister, and Cabinet government is collective. But in this case it mattered politically because the Bill was being rushed through all stages under urgency. MPs were being asked to debate a complex welfare Bill without a select committee process, while parts of the Regulatory Impact Statement were redacted.

The Government’s argument was consistent.

Scott Simpson said the Bill was “not about changing who gets support”, but “about making sure the system delivers support properly and sustainably”. He described MSD as making millions of decisions each year, many of them routine and rules-based. His case was that legislation had not kept up with modern service delivery, creating manual processing, duplication, inconsistency and unnecessary administrative work.

Cameron Brewer repeated the same argument at second reading. The purpose of welfare, he said, remained unchanged, but delivery needed to evolve. Many decisions were straightforward and rules-based. Automation would improve timeliness and consistency, while preserving safeguards and review rights.

National’s frame was administrative: modernisation, efficiency, consistency, safeguards, sustainability, and no change to formal entitlement.

ACT’s List MP Dr Parmjeet Parmar added a more explicitly pro-technology and pro-savings argument. She said automated decision-making was already being used, and that the Bill would allow MSD to use it more broadly without legal risk. Later, when savings were raised as a criticism, she said ACT did like savings, because savings could be directed where they were needed. She also linked the Bill to helping people into employment.

That framing revealed one of the Bill’s deeper blind spots. ‘Savings’ were spoken about as if they could simply be redirected to better purposes, without enough attention to where those savings might come from, or who might carry the cost. Likewise, the repeated link between automation, staff time and employment conversations made more sense for people who are work-ready than for people on health or disability-related support, people whose conditions mean they cannot reasonably be expected to work, or carers whose unpaid work is already meaningful, demanding and economically valuable. A carer supporting a disabled, chronically ill or cognitively impaired person is not outside the world of work. They are often doing the work that prevents or delays more intensive and expensive formal care.

New Zealand First’s List MP Jamie Arbuckle used a shorter but politically revealing frame. He said the Bill was a significant step towards a more efficient, modern welfare system serving” both taxpayers and those in genuine need”.

The problem with ‘genuine need’ language is not that need should be ignored. It is that welfare debates often turn ‘genuine need’ into a suspicion frame. The question becomes less ‘how do we make sure people get support?’ and more ‘how do we make sure the wrong people do not?’ That shift matters because people with genuine need can still fail administrative tests. A missed letter, delayed medical certificate, cognitive impairment, unstable housing, or lack of support does not make someone’s need less genuine.

Across the Coalition parties, the shared argument was clear: the Bill was technical, sensible, modernising, financially responsible and safe.

The Opposition’s answer was equally clear: access to support can be changed without formally changing entitlement.

The first fault line: entitlement versus access

This was the most important divide in the debate.

The Government treated welfare administration mainly as a delivery mechanism. If eligibility settings did not formally change, the Bill could be framed as safe. If automated decision-making was rules-based and safeguarded, it could be framed as efficient. If staff time was freed up, it could be framed as better service.

Opposition MPs treated welfare administration as a site of power.

Labour MPs, Green MPs and Te Pāti Māori MPs kept returning to the practical conditions under which people actually receive support: notices, deadlines, reviews, medical evidence, medical examinations, digital systems, human discretion, and what happens when someone does not respond in time.

That is not a small distinction. It is the core of the debate.

A person may remain legally entitled to assistance. But if they miss a letter, cannot get a GP appointment, cannot upload a form, cannot understand an MSD notice, cannot use MyMSD, cannot get through on the phone, cannot remember the deadline, or does not have someone to help, their practical access can still be lost.

This is why the Bill was not simply about technology. It was about where risk sits when welfare systems are made more automated, more review-driven, and more dependent on people responding correctly and on time.

The weakness in the Government’s reassurance was that it treated entitlement and access as separate. In welfare systems, they are not. A person can remain formally eligible but still lose practical access because a review is triggered, information is not supplied in time, medical evidence is delayed, a notice is missed, or an automated system treats non-response as non-compliance.

The second fault line: scrutiny

The redacted Regulatory Impact Statement became one of the central features of the debate.

Helen White, Labour MP for Mt Albert, went straight to this issue. She pointed out that key parts of the RIS, including parts explaining the policy problem, were redacted. Her concern was not simply that some information was withheld. It was that Parliament was being asked to pass a significant Bill without being able to see clearly what problem the Bill was meant to solve.

Ricardo Menéndez March, Green List MP, made a related point. He argued that the RIS appeared to assume the select committee process would allow wider consultation, but urgency removed that opportunity.

This matters. If the Government says a Bill is simple, technical and safe, select committee scrutiny is where that claim can be tested. If the safeguards are strong, affected communities can examine them. If the Bill will not cause harm, disabled people, carers, beneficiaries, Māori, Pacific communities, health practitioners, lawyers and advocates can tell Parliament whether that matches their experience.

None of that happened.

The question ‘why urgency?’ kept coming back through the debate. Opposition MPs asked why a 122-page Bill dealing with automated decision-making, medical evidence, mandatory reviews, suspension and cancellation needed to be rushed through without public submissions.

Louise Upston later said she had answered this many times. The Government’s answer was, in effect, that the Bill was straightforward, did not change entitlement, and related partly to automated decision-making already being used.

But that answer did not resolve the procedural concern. In fact, it illustrated the deeper problem. The Government was asking MPs and the public to trust its characterisation of the Bill while denying the public the normal process for testing it.

Urgency did not just shorten the debate. It shifted power away from the people affected by the Bill and towards the Government’s own account of what the Bill meant.

The third fault line: the breadth of automated decision-making

The Government repeatedly described automated decision-making as simple, rules-based and safeguarded.

Opposition MPs kept asking why, if that was true, the legal power was so broad.

Ricardo Menéndez March quoted the broad authorising language that enables MSD to approve use of an automated electronic system to make decisions, exercise powers, comply with obligations, or take related action under specified provisions. He asked whether this could reach hardship grants, food grants, emergency housing, or other decisions that directly affect whether a person eats or keeps a roof over their head.

That question mattered because Government reassurance focused on intended use. Opposition concern focused on authorised power.

The Departmental Disclosure Statement says the Bill creates a general authorising provision for automated decision-making, and that MSD currently does not have a broad power to use automated decision-making outside targeted existing use. It also says automated decision-making may be used in mandatory reviews, medical reviews and the end-of-school-year process. It says automated decision-making may process a review when a client confirms information is correct, and may suspend a benefit if the client does not respond within the specified period.

That is not just a back-office efficiency measure. It is a change in how welfare decisions may be carried out.

Government MPs stressed safeguards. Opposition MPs asked what those safeguards mean before income is stopped, not only after a person tries to challenge a decision.

Upston’s ‘myth busting’ was politically effective in one sense: it kept returning the debate to formal entitlement, existing automated decision-making use, and the claim that decisions would be simple and rules-based. But it did not fully answer the Opposition’s deeper concern. The issue was not only whether the Bill changed entitlement rules. It was whether the Bill strengthened MSD’s administrative power in ways that could make support harder to keep in practice, especially for people least able to respond quickly and accurately to system demands.

Robodebt as a warning, not a copy-and-paste comparison

Several Opposition MPs referred to Australia’s Robodebt scheme. That comparison should not be used lazily. New Zealand is not copying Robodebt exactly.

But Robodebt is a legitimate warning example because it shows how automated welfare administration can cause serious harm when legal authority, system design, debt recovery, weak human oversight and political pressure combine. The Australian Royal Commission examined the scheme, and the Australian Government has described it as unlawful.

The relevant lesson for New Zealand is not that every automated system is Robodebt. It is that welfare automation requires strong legal limits, transparency, human judgement, public scrutiny and accessible review before people’s income is put at risk.

That is why the comparison kept surfacing in the debate. It was less about saying ‘this Bill is Robodebt’ and more about warning that welfare automation can go badly wrong when systems are designed around efficiency and compliance before lived reality, legal safeguards and human judgement.

The fourth fault line: medical proof

The medical evidence provisions were another major focus.

The Bill affects Jobseeker Support on health condition, injury or disability grounds, Supported Living Payment, Child Disability Allowance and Disability Allowance. It requires medical certificates or other medical evidence before MSD can grant or continue relevant support where medical coverage expires. It also allows MSD to require a medical examination by a prescribed or preferred health practitioner where eligibility is questioned.

The Government framed this as clarification. For medical benefits, eligibility depends on up-to-date medical information. If medical coverage ends, updated evidence may be required. Extensions or deferrals may be available in exceptional circumstances.

Opposition MPs asked what this means in real life.

Helen White raised the loss of autonomy and human connection when vulnerable people are required to undergo medical examinations through systems they cannot realistically refuse. Ingrid Leary, Labour MP for Taieri, raised the indignity of people with obvious lifelong disabilities being repeatedly required to prove what is already known. Priyanca Radhakrishnan, Labour List MP, pressed the question of preferred health practitioners, including what happens when MSD does not accept a person’s own chosen practitioner, or where the practitioner selected through the MSD process does not understand the person’s condition.

Kahurangi Carter, Green List MP, made the practical point that seeing a GP is already difficult in many parts of Aotearoa New Zealand. If the health system itself is stretched, then requiring more medical proof can become a barrier to support.

The concern is not that medical evidence is new. Medical certificates have long been part of health-related benefit systems. The concern is that the Bill places more formal machinery around medical review, certification, non-response, suspension and cancellation.

For someone already unwell, disabled, caring for someone else, or managing a complex condition, another certificate is not just paperwork. It can mean cost, transport, delay, stress, retelling, and the risk that the system treats delay as non-compliance.

That brief Coalition framing of medical evidence as a simple matter of expired coverage and new certification missed the practical burden. Simplicity from the system’s point of view is not the same as simplicity for the person affected. A medical certificate may require money, transport, a timely GP appointment, the ability to explain a complex condition, and help from a carer or advocate. For progressive, permanent or poorly understood conditions, repeated proof can become degrading and wasteful rather than clarifying.

The fifth fault line: carers and whānau

The debate was not only about disabled people or people receiving benefits directly. It was also about carers.

Ingrid Leary’s questioning on carers was important because it linked the Bill to the unpaid work already carried by families and supporters. In discussing Supported Living Payment for carers and new medical certificate requirements, she asked how the Bill aligned with the Government’s own Carers’ Strategy, Mahi Aroha - Carers’ Strategy Action Plan 2019 - 2023. Here it should be noted that there is a draft Carers Action Plan, which has closed for consultation and that “MSD will review and analyse the consultation feedback we received. A summary of engagement and the final Carers’ Strategy Action Plan will be developed and published, pending Cabinet decisions”. Those strategies speak about carers being recognised, supported, trusted, and assisted to navigate systems more easily.

Leary’s question was simple: how does adding medical certification and review machinery help carers navigate systems more easily?

She also asked which carer support groups had been consulted, whether modelling had been done on carers supposedly receiving support when they should not be, and whether carers of Māori and Pacific whānau had been consulted.

I could not find a direct answer to those specific carer questions in the debate. The Minister gave general answers about agency consultation, safeguards, existing review processes and the ADM standard, but she did not appear to name any carer support groups consulted, provide carer-specific modelling, or answer directly whether carers of Māori and Pacific whānau had been consulted. That absence matters. If carers are expected to carry more of the practical work of navigating medical evidence, review processes and MSD communication, then carers should have been directly heard before the Bill was passed.

Because carers are often the hidden administrative workforce of welfare access. They open the letters. They book the GP appointments. They chase the medical certificates. They manage MyMSD. They explain the history. They try to prevent the system from misreading illness, disability or cognitive impairment as non-compliance. Their experience can help co-create a welfare access system that returns welfare power to an equitable balance.

However, if the State increases review requirements, medical evidence requirements or automated compliance processes, unpaid carers may become the shock absorbers of that system.

That issue should have been central. Instead, it had to be forced into the debate by Opposition questioning.

The sixth fault line: language

One of the most revealing parts of the committee stage came near the end, when MPs debated the title and commencement clauses.

This might sound procedural, but it was not. The title of the Bill was itself part of the political argument.

The Government called it the Social Security (Modernisation) Amendment Bill. ‘Modernisation’ is a reassuring word. It suggests updating old systems, reducing delay, improving accuracy and making administration more efficient.

Opposition MPs challenged that framing.

Priyanca Radhakrishnan suggested titles such as ‘The Government Wants More Power Over Disabled People’s Medical Information’, ‘Expansion of State Power into People’s Lives’, and ‘Making it Harder for Those Getting a Supported Living Payment’. Ricardo Menéndez March suggested replacing ‘Modernisation’ with terms such as ‘Automation’, ‘Expansion of Automated Decision-Making’, or ‘Medical Certificate Requirement Adjustment and Other Matters’.

These suggested titles were political, but they were not random. They captured what Opposition MPs thought the Government’s chosen title concealed: compliance, automation, medical proof, state power, and the expansion of MSD authority over people who rely on income support.

The title debate revealed the whole argument in miniature.

For the Government, ‘modernisation’ meant efficiency.

For Opposition MPs, ‘modernisation’ was the soft language used to make a harder welfare compliance Bill sound benign.

The third reading: after the testing, the warnings hardened

The third reading deserves more attention than it often gets.

By then, the House had been through first reading, second reading, committee stage, questions, amendments, repeated party-line votes and repeated Government reassurances. Opposition MPs were no longer simply warning about what the Bill might do. They were making a final judgement after seeing how the Government responded to scrutiny.

The Government largely returned to its opening frame.

Dana Kirkpatrick, National MP for East Coast, said the Government welcomed innovation, technology and advancement, and that New Zealand should not be afraid of “a more efficient, modern welfare system”. Dan Bidois, National MP for Northcote, linked the Bill to “fixing the basics” and building a future with technology. Upston’s final framing stayed close to the same message: efficiency, consistent decision-making, routine processes, reduced administrative burden and more staff time for support.

The difficulty with that framing is that it treated public concern as fear of innovation. But much of the Opposition critique was not fear of technology itself. It was concern about where technology is being placed in the welfare system, what decisions it may affect, who is consulted, what happens before support is suspended, and whether review rights are meaningful for people already under pressure.

Opposition MPs drew the opposite conclusion.

Ingrid Leary’s third-reading contribution was one of the strongest. By that point, she was no longer just asking what the Bill might do. She was drawing conclusions from the debate. Her view was that the Government had not properly engaged with the Bill’s implications and had hidden behind claims of technical modernisation. She returned to disabled people and carers, arguing that the Bill would place more burden on people already navigating difficult systems.

Her carer focus remained important. She argued that carers are already among the hardest-working and least-recognised people in the country, and that adding medical certification, cost, logistics and proof requirements moves in the opposite direction from what carer-focused reports and strategies have called for.

Reuben Davidson, Labour MP for Christchurch East, argued that after several hours of going through the Bill, the debate had shown “a Government that wants to make life harder for New Zealanders”. His contribution returned to electorate office examples of people dealing with distressing MSD situations, including people needing human help with housing, dental support, hardship and crisis. His point was that these are not abstract administrative cases. They are human crises.

Other Opposition language was even more direct. Ingrid Leary’s contribution argued that “all New Zealanders should be worried”, because the Bill created wider secondary powers that could be expanded over automated decision-making in welfare. Her contribution described the Bill as being pushed through by “sleight of hand under urgency”.

Reading those lines, I found myself nodding my head in agreement.

The third reading therefore mattered because it showed the trajectory of the debate.

The Government began and ended with the same reassurance: modernisation, efficiency, safeguards and no change to entitlement.

Opposition MPs began with concern, tested those concerns through committee-stage questioning, and ended more convinced that the Bill was broader, riskier and less democratically scrutinised than the Government admitted.

Reader guide: who carried the debate?

For readers who want to know whether their local MP or party took a visible role, this is a simplified guide to the debate. It is not a scorecard. Some MPs gave detailed speeches; others made brief calls or interjections. The point is to show the pattern of participation.

What the debate revealed

This was not simply a debate about whether MSD should use technology. It was a debate about who carries the risk when technology is used in a welfare system built around imbalance.

The Coalition parties had a coherent political message. National emphasised modernisation, efficiency, consistency, safeguards and no change to formal entitlement settings. ACT emphasised technology, legal authority, savings and employment. New Zealand First emphasised taxpayers and those in ‘genuine need’.

The Opposition parties had distinct but overlapping critiques. Labour emphasised scrutiny, redactions, urgency, medical evidence, preferred practitioners, carers and human judgement. The Greens emphasised broad automated powers, Robodebt-style warnings, hardship, disability rights and the loss of discretion. Te Pāti Māori emphasised Māori, whānau, poverty, surveillance, systemic bias, mana and Te Tiriti. Independent MPs Tākuta Ferris and Mariameno Kapa-Kingi are recorded as voting with the Noes, and Kapa-Kingi’s amendments show that opposition to the Bill also included clause-level attempts by independent MPs to change it.

But the deepest divide was not party branding. It was analytical.

The Government treated welfare administration as a delivery mechanism.

Opposition MPs treated welfare administration as a site of power.

That is the insight I keep coming back to.

This first article has focused on what the debate revealed about Parliament, process and political framing.

Part 2 will ask what this Act may mean in practice for the people who have to live with it.

That matters, because we will not be able to submit on this Bill. The Government is taking all stages under urgency, and as I type this, Parliament is already in the Committee of the whole House stage. The public is being asked to understand a 122-page Bill after the process for public input has effectively been bypassed.

The Bill is 122 pages long. I have only skimmed the Explanatory note myself, then used ChatGPT to help review the full Bill and identify key issues. The prompts I used are included at the end of this article. It changes the Social Security Act 2018 and the Social Security Regulations 2018. It deals with automated decision-making, mandatory reviews, medical evidence requirements, benefit suspension, cancellation, and what happens when a dependent child turns 18.

I have not had time to do the full clause-by-clause analysis this Bill deserves. Very few people outside Parliament will have had that time. So this is a first-read awareness post, not a final detailed analysis. It may need further checking as more information becomes available.

But even on a first read, there are enough red flags to say this clearly: this Bill should not be rushed.

What the Bill says it is doing

The Government is presenting it as welfare ‘modernisation’. The Departmental Disclosure Statement says the Bill is intended to enable a more efficient, modern welfare system through the use of automated decision-making.

That sounds bland. It is not.

In the Bill, automated decision-making means a decision made within an automated process where there is no substantial human involvement. The Bill would allow MSD to approve the use of automated electronic systems to make decisions, exercise powers, comply with obligations, or take related actions under social security law.

That could include continuing a benefit. But it could also include suspending or stopping a benefit where a person does not respond within the required timeframe.

The Departmental Disclosure Statement is blunt about this. It says payments may be increased, decreased, or stopped, depending on a person’s circumstances. It also says benefits may be suspended where people do not respond to information requests, and cancelled if they still do not respond after eight weeks in some cases.

So this is not just about efficiency. It is about compliance, savings, and administrative control.

Why the review and medical evidence changes matter

The Bill also expands mandatory reviews. MSD will be checking more benefits to confirm whether people remain eligible and are being paid the correct rate. In theory, reviews can protect people from underpayment or overpayment. In practice, they can also become another point where people lose income because they miss a notice, misunderstand a request, cannot get documents in time, or cannot navigate the system.

The Bill also strengthens medical evidence requirements for several benefits, including Jobseeker Support on health condition, injury or disability grounds, Supported Living Payment, Child Disability Allowance, and Disability Allowance.

That is particularly concerning.

People who rely on these supports are often dealing with illness, disability, exhaustion, poverty, trauma, unstable housing, limited digital access, long waits for GP appointments, or difficulty getting specialist reports. If the system becomes more automated, more deadline-driven, and more dependent on rapid responses, the people most likely to be harmed are the people already least able to keep up.

Why this matters for Young-onset Dementia

As usual, I am applying my Young-onset Dementia advocacy lens to this story. But that does not mean others should stop reading here. This Bill affects a very broad community, potentially hundreds of thousands of people. For people with Young-onset Dementia, their whānau and supporters, the risks are especially obvious.

Young-onset Dementia is dementia first experienced before 65. People may still be working, raising children, paying a mortgage or rent, or trying to survive the long and confusing period before diagnosis. Many do not fit neatly into older-person services. Many do not fit disability support pathways either. Some may rely on Jobseeker Support on health grounds, Supported Living Payment, Disability Allowance, Temporary Additional Support, or support linked to a partner, spouse, whānau member or family carer.

These are not abstract examples. The Bill directly touches Jobseeker Support on health grounds, Supported Living Payment, Disability Allowance, medical evidence requirements, review processes, and the suspension or cancellation of related assistance, including Temporary Additional Support in some situations.

Dementia can affect memory, planning, attention, communication, judgement, and the ability to respond to letters, forms, online systems, appointments and deadlines. Those are exactly the abilities an automated welfare system may quietly assume people still have.

That creates a serious problem.

A person may not lose support because they are no longer entitled to it. They may lose support because they did not understand a notice, did not open the right letter, could not upload a document, could not get a GP appointment in time, or did not have a family member or advocate available to help.

For carers and supporters, this Bill could mean more administrative pressure. More medical certificates. More review deadlines. More chasing MSD. More responsibility to make sure the person they support does not fall off the system because of process failure.

The Robodebt warning

This is why the comparison with Australia’s Robodebt is fair as a warning, even if this Bill is not the same thing. Several Opposition MPs are raising Robodebt in the debate, while the Minister is saying this is not Robodebt.

For readers unfamiliar with Robodebt, it was an Australian welfare debt recovery scheme that used automated processes to raise debts against people receiving social security payments. Many debts were wrongly calculated, including through income averaging, and people were pursued for money they did not actually owe. The scheme caused serious harm before being found unlawful, and a Royal Commission later exposed major failures in legality, accountability, administration and human oversight.

The issue is not whether New Zealand is copying Robodebt exactly. The issue is that automated welfare administration can cause serious harm when governments prioritise speed, savings and compliance over human context, explanation, appeal rights, and dignity.

The process is also worrying

The Departmental Disclosure Statement also raises process concerns. It says there were no publicly available inquiry, review or evaluation reports that informed the Bill. It says Māori were not specifically engaged, despite Māori being disproportionately represented in the welfare system. It says the April 2026 regulatory impact addendum only ‘partially meets’ quality assurance requirements because of limited consultation.

Yet this is being debated under urgency.

That is not just a process concern. It is a democratic concern. A 122-page Bill affecting benefit entitlement, medical evidence, automated decision-making, suspension and cancellation should not be pushed through all stages under urgency when the public is still trying to work out what it says.

If consultation has mainly been with government agencies, then carers, disabled people, beneficiary advocates, dementia organisations, and people directly affected have effectively been left to find out in real time.

That is not good enough.

A note on using ChatGPT for this quick article

Because the Bill is long and moving quickly, I used ChatGPT as a reading and drafting aid to help identify the key issues and shape this quick summary. ChatGPT helped create this article, but I have read the Bill material, edited the draft, checked the wording, and worked through several iterations myself.

I am also working under huge time pressure to get this out while the Bill is still being debated. I am listening to Parliament TV as I type this, and the concerns being raised by Opposition MPs are very similar to the concerns outlined above. That gives me some confidence that the issues identified here are real and not simply errors from a rushed AI-assisted reading.

Even so, this should be read as a rapid first response, not a final legal or policy analysis.

The prompts I used included:

‘Acting as an expert in New Zealand’s social security system, and in NZ legislation analysis, what is this new Bill introduced today and being debated right now under urgency trying to do, and will it have a positive or negative effect on people on benefits, and people with Young-onset Dementia, their whānau and supporters?’

I then provided the Bill and the Departmental Disclosure Statement and asked for further analysis of what the documents showed.

My initial conclusion

This Bill is being sold as modernisation, but the documents show something more serious. It expands automated decision-making in a system where missed notices, delayed medical evidence, cognitive impairment, disability, poverty, digital exclusion and carer burnout can lead directly to loss of income.

For people on benefits, this is high risk.

For people with Young-onset Dementia, their whānau and supporters, it is especially concerning.

I am frustrated about Budget 2026.

I am not surprised.

For people with dementia mate wareware, their whānau, and supporters, this Budget looks like another year of warm words, general health funding, and no dedicated dementia response.

The most frustrating part is not that there is nothing in the Budget that could ever help anyone with dementia. Of course some things may help some people. People with dementia use GPs. They end up in emergency departments. They need hospital care, medicines, ambulance services, home support, residential care, food security, housing support and practical help.

But that is not the same as a funded dementia plan.

So far, the only specific dementia funding I can see continuing is the same Dementia Mate Wareware Action Plan implementation support funding that traces back to Budget 2022.

I am relieved it appears to continue.

I am also angry that, four Budgets later, this still seems to be the funding line doing most of the work.

That funding was never enough to implement a national dementia response. It was limited implementation support. It helped fund activity, pilots and work around the first Dementia Mate Wareware Action Plan 2020 to 2025. It was important, but it was not the full answer then.

It cannot be made to look like the answer now.

Yet that is what seems to be happening.

The refreshed Dementia Mate Wareware Action Plan 2026 - 2031 was presented to Associate Minister of Health and Minister for Seniors Casey Costello at the Alzheimers NZ Conference in September 2025.

At that conference, she spoke about dementia not being only an aged-care issue. She acknowledged that younger people with dementia may need different supports. She talked about joined-up services, navigation, respite, and the need to persuade Cabinet colleagues if more funding was required.

Those words created a clear test for Budget 2026.

Would the Government fund the refreshed Action Plan?

Would it provide new money for dementia navigation, respite, community support, workforce development, NGO capacity and age-appropriate services?

Would it finally recognise Young-onset Dementia as more than a small footnote in an older-person system?

On the evidence so far, the answer is no.

Folding a plan into existing work is not implementation

This Budget also makes Casey Costello’s later parliamentary answers more concerning.

When asked about Young-onset Dementia and the refreshed Action Plan, the answer was not a clear Cabinet endorsement. It was not a new funding commitment. It was not a national age-appropriate pathway.

Instead, the line seemed to be that Health New Zealand would acknowledge the Action Plan and fold relevant parts into existing work.

That may sound tidy in Parliament.

It does not sound tidy when you are living it.

For families like mine, ‘existing work’ often means the same gaps we already know too well. It means trying to work out who is responsible. It means services that vary by region. It means support that may exist in theory but is hard to access in practice. It means families repeating the same information, chasing the same referrals, and trying to make sense of systems that were not designed around Young-onset Dementia.

When a Government receives a refreshed national Action Plan, then folds it into existing work without a clear Budget line, public milestones, Cabinet backing or accountability, families are entitled to ask what has really changed.

Because from the outside, it looks less like implementation and more like absorption.

The plan is acknowledged.

The sector is thanked.

The work is folded in.

And families keep carrying the load.

Young-onset Dementia is still being left without a proper response

I come to this as a Young-onset Dementia advocate, but also as someone who knows what this looks like inside a real life.

Young-onset Dementia is dementia first experienced before 65. It can affect people in their 40s, 50s and early 60s. People may still be working. They may still have children or young adults depending on them. They may still have rent or a mortgage. Their partner may need to keep earning while also becoming a carer. The family may be years away from New Zealand Superannuation.

It is not simply dementia happening earlier.

It is dementia at a life stage where the usual assumptions do not fit.

The older-person system, represented by our failing Aged Care system, often does not fit. The disability system often does not fit. Employment support, income support, housing support, carer support and health services are not joined up around the reality of a younger person losing capacity while the family around them is still trying to work, parent, pay bills and plan for an uncertain future.

That is why the absence of a Young-onset Dementia initiative in Budget 2026 is so hard to accept.

No national pathway.

No dedicated age-appropriate service development.

No clear respite expansion.

No obvious funding for younger people who may eventually need residential dementia care but do not belong in a setting designed mainly for much older people.

No real answer for spouses and partners who become carers years before retirement age.

This is not a small policy omission. It is a whole group of people being left in a system that still does not know where to put them.

The priority populations have been failed again

The Dementia Mate Wareware Action Plans already identify priority populations. These include Māori, Pacific peoples, people with Young-onset Dementia, and people living in rural and remote communities.

Those groups are not named for decoration.

They are named because the current system does not work equally for everyone. Some people face later diagnosis, poorer access, fewer local services, less culturally safe support, transport barriers, workforce shortages and fewer realistic choices.

Budget 2026 does not appear to meet that challenge.

A general health uplift does not guarantee culturally grounded dementia support for Māori or Pacific families.

More national health activity does not guarantee access for people in rural or remote communities.

More residential aged care bed nights does not tell us whether dementia-level, psychogeriatric, respite or age-appropriate care will be available where people actually live.

And for Young-onset Dementia, the gap remains painfully obvious.

The refreshed Action Plan says people with Young-onset Dementia need age-appropriate support. The Budget does not appear to fund it.

Some families may be put under more pressure

There is another reason this Budget worries me.

For older people with dementia who receive New Zealand Superannuation, some parts of the welfare system may be less directly relevant. But for people with Young-onset Dementia and their whānau, the picture is different.

Under-65 families may be dealing with lost income, reduced work, benefit rules, housing costs, Temporary Additional Support, Accommodation Supplement, Mobility issues, disability-related costs, and caring responsibilities all at once.

Budget 2026 includes some extra help in places, including continuing food support programmes and increasing Accommodation Supplement maximum rates from April 2027. But the same wider package also reduces the maximum rate of Temporary Additional Support for people not receiving NZ Super or Veteran’s Pension, and increases Income-Related Rent, emergency housing and transitional housing contributions from 25 to 30 percent. Ministers say social housing rents will rise for around 84,000 households by an average of about $31 a week. And beyond the Budget documents themselves, the wider 2026 policy picture includes higher Total Mobility costs for users from July, with the subsidy falling from 75 percent to 65 percent.

For a family already stretched by Young-onset Dementia, even small changes can hurt.

For dementia families under 65, especially those dealing with reduced income, transport barriers, housing stress and caring responsibilities, these are not abstract policy changes. They are extra pressure points.

When one person loses work because of dementia, and another loses hours because they are caring, the household budget does not wait for a policy review. The bills keep coming. The rent or mortgage keeps coming. The care needs keep increasing.

That is why it is not enough for Ministers to say there is record health funding.

The question is whether the Budget recognises the real life being lived.

For many dementia families, especially under 65, it does not.

This was the Budget test

Before Budget 2026, the test was straightforward.

Table 1 Budget 2026 Dementia Policy Scorecard

Would the Government provide genuinely new dementia funding, new programmes, or clear implementation commitments?

Would it fund the refreshed Dementia Mate Wareware Action Plan 2026 to 2031?

Would it do more than repackage existing work, existing pilots, and old Budget 2022 funding?

Would it finally respond to Young-onset Dementia with the seriousness the issue deserves?

So far, the answer appears to be no.

That is why Budget 2026 fails to deliver for people with dementia, their whānau and supporters.

It fails even more seriously for the priority populations already identified in the Dementia Mate Wareware Action Plans.

And for people with Young-onset Dementia and their families, it confirms what many of us already feared: the Government can acknowledge the issue, receive the plan, speak kindly to the sector, and still not fund the support people actually need.

That is not good enough.

People with dementia deserve more than being folded into existing work.

Whānau and carers deserve more than another year of carrying the consequences of underfunded policy.

Suggested source links for further reading

• Budget 2026 Summary of Initiatives

• Vote Health Estimates 2026/27

• Minister of Health Budget 2026 press release

• Dementia Mate Wareware Action Plan 2026 - 2031

That is seven more sleeps.

Or, for some of us with a person with dementia in our household, it may mean seven more nights of broken sleep, hoping we can get some support and respite.

For those with Young-onset Dementia, their whānau and supporters, that hope includes something even more specific: support that is age-appropriate and life-stage-appropriate.

But hope is not a care plan.

Nor is it a joined-up pathway of support and services.

And hope does not decide whether we should take our loved one with dementia to ED at 2 am, or try to manage the crisis at home.

That is part of the reality for many people with dementia, their whānau and supporters living at home and in the community: when crisis arrives, but the support and services needed are still not there.

So Budget 2026 should be judged by more than hope, sympathy, or warm words.

It needs a policy test.

For dementia, that policy test should not be whether the Government mentions dementia, folds it into aged care, points to existing pilots, repackages normal annual uplifts as ‘new’ funding, extends short-term trials, or says work is underway.

That is not dementia policy. It is political holding language. And it is one reason successive governments have failed to build a system that matches the scale and reality of dementia.

The policy test is much clearer than that:

Does Budget 2026 provide genuinely new funding, new programmes, or clear implementation commitments for people with dementia, their families, whānau, carers and supporters?

That is the question I will be watching.

We will not know the full answer on Budget day itself. Vote Health details, other relevant Votes, parliamentary speeches, Budget documents and follow-up announcements will need to be checked before we can properly judge what has really been funded.

Based on the Government’s pre-Budget signalling, I am not expecting a major dementia package.

That signalling includes more than general Budget restraint. It includes announced changes to the Total Mobility Scheme, the introduction of the Disability Support Services Bill this week, and Associate Health Minister Casey Costello’s recent comments in Parliament.

Costello’s answers did not sound like a Minister announcing a funded national dementia policy programme. They sounded like a Minister locating dementia inside existing aged care work.

So far, those answers have not pointed to Cabinet endorsement, dedicated funding, or a clear national implementation pathway for dementia.

Is my ‘no expecting anything in the Budget’ stance pessimistic? Sadly, yes.

Is it realistic? Also yes, given the language Ministers are using.

That language has been about restraint, limited new commitments, savings, reprioritisation and tight control of discretionary spending.

But realism does not lower the standard by which Budget 2026 should be judged.

Because this is not only a question of spending.

It is a question of policy.

A Budget shows what the Government has chosen to fund, what it has chosen to defer, and what it has chosen to leave for families, carers, NGOs and crisis services to absorb.

Why Budget 2026 matters

This is not happening in a vacuum.

At the Alzheimers NZ conference on 24 September 2025, Associate Minister of Health Casey Costello went further than general sympathy. She said dementia was not just an aged care issue. She acknowledged that younger people with dementia may need different supports and services. She said she and Minister of Health Simeon Brown wanted a more joined-up approach to dementia, including better support, navigation and respite.

She also indicated that more funding would be needed, but that she and Brown would have to persuade their Cabinet colleagues.

That matters.

Budget 2026 is where that rhetoric meets Cabinet decision-making.

Since then, the public record has been much less reassuring.

Ingrid Leary’s Written Questions and questions in the House have pressed the Minister to comment on Young-onset Dementia, the refreshed Dementia Mate Wareware Action Plan, service pathways, Budget provision, and whether there is specific funding or accountability for Young-onset Dementia.

So far, the answers have not shown a clear Cabinet-backed implementation plan.

They have not shown a ring-fenced Young-onset Dementia budget.

They have not shown a national age-appropriate Young-onset Dementia pathway.

They have leaned heavily on existing services, existing pilots, generic supports and work already underway.

I have written about those answers in more detail elsewhere, which I’ve linked to above, so I will not repeat that full analysis here.

But it means Budget 2026 is not just another Budget.

It is the first real test of whether dementia has moved from ministerial recognition to Cabinet-backed action.

My own advocacy focus is Young-onset Dementia, because that is the area I know best through lived experience, research, advocacy and policy work.

But this Budget test is about dementia as a whole.

All people with dementia deserve timely diagnosis, proper post-diagnostic support, navigation, respite, carer support, community services, and later-stage care that respects dignity, rights and real life circumstances.

Young-onset Dementia simply makes some of the policy failures harder to ignore, because it exposes how poorly the current system fits working-age lives.

It can affect people while they are still working, raising children, paying rent or a mortgage, supporting partners, caring for others, and years away from New Zealand Superannuation.

The harm often begins before diagnosis.

Changes may be misread as stress, burnout, depression, menopause, relationship problems, workplace conflict, alcohol or drug issues, or simply ‘not coping’.

By the time a diagnosis is finally made, families may already have lost income, confidence, time, employment security, relationships, and trust in the system.

After diagnosis, too many families are still handed a diagnosis but not a pathway.

That is why I keep using the phrase age-appropriate and life-stage-appropriate support and services.

It is not a slogan.

It is a test of whether the system fits people’s lives.

The refreshed Dementia Mate Wareware Action Plan 2026 - 2031 is important. It gives Government and the health system a starting point for dementia policy.

But it is only a starting point.

Dementia policy in New Zealand needs more than another plan sitting on a shelf.

It needs funding where services are underfunded.

It needs new programmes where the current system does not fit.

It needs clear implementation where responsibilities are blurred.

It needs public reporting, so dementia does not disappear into broad health, aged care, disability or social support categories.

My Budget 2026 dementia policy scorecard

When the details are available, I will be looking for this:

Table 1 Budget 2026 Dementia Policy Scorecard

If the answer to most of these is no, then dementia has not been prioritised.

It may have been mentioned.

It may have been acknowledged.

It may have been tucked inside a wider aged care or health announcement.

But acknowledgement is not policy.

And policy is what determines whether people get help early, or only when they reach crisis.

Policy determines whether carers get support before they burn out, or only sympathy after they collapse.

Policy determines whether Young-onset Dementia is treated as a distinct life-stage issue, or quietly pushed back into systems designed for much older people.

Policy determines whether dementia support is funded nationally, delivered consistently, and reported publicly, or left to postcode luck, NGO capacity and family endurance.

So when Government does not fund and implement dementia support, the cost does not disappear.

It is pushed back into people’s homes.

It is pushed onto partners, children, whānau, unpaid carers, NGOs, hospitals, aged residential care, and people with dementia themselves.

That is not fiscal responsibility.

It is asking families to absorb the failure of policy.

The Budget is the first test. The election is the bigger one.

Budget 2026 is therefore not just a funding test.

It is a policy test.

And the 2026 election is the bigger one.

So:

• When politicians talk about health, ask about dementia policy.

• When they talk about carers, ask about dementia policy.

• When they talk about older people, ask about dementia policy.

• When they talk about disability, ask about dementia policy.

• When they talk about fiscal responsibility, ask who is really carrying the cost of underfunded policy.

And ask this:

Will your party support funded dementia policy that delivers timely diagnosis, post-diagnostic support, respite, community services, and age-appropriate support for people with Young-onset Dementia, or will families keep being used as the default policy response?

That is the Budget test.

That is the election test.

And voters deserve an answer before they vote.

I have written before that Young-onset Dementia is not just a diagnosis. It is ‘a whole life interrupted, often in ‘systems that do not fit’ because they are designed for older, frailer people with dementia.

I have also written about the links between dementia, poverty, and the structural conditions that shape dementia risk and prevalence in Aotearoa New Zealand. This article sits across all three of those threads.

Those were never just tidy lines for an article.

They came from lived experience, and from watching how risk and support are distributed. When my wife Jacki developed Young-onset Dementia, the harm was never confined to what was happening in her brain. It ran through work, income, stress, relationships, transport, and the exhausting business of trying to make systems listen. It exposed something I keep coming back to in my writing: when dementia arrives under 65, the gaps are sharper, the assumptions are worse, and the services are often built for somebody else.

That is why these two recent Lancet Neurology articles matter.

They are not offering some abstract theory for policymakers to admire from a distance. They are making a very practical point. The first, an editorial accompanying the full issue, argues that brain health should be treated as a form of ‘brain capital’: not just the absence of disease, but the capacity to think, learn, adapt, relate to others, and function well across life. [1]

The second says brain health policy must centre equity, because neurological and psychiatric conditions are shaped not only by biology and treatment, but by social, economic, political, and environmental conditions as well. [2] That lands especially hard in Aotearoa New Zealand, where I have already written about the Coalition Government removing equity from the Pae Ora Healthy Futures Act. So when this Lancet Neurology article says brain health policy must centre equity, it is not making an abstract point. It is pointing straight at a live policy fault line here.

What these Lancet articles are really saying

If these articles are right, and I think they are, then brain health policy must start much earlier and run much wider than most governments seem willing to admit.

It has to include decent housing, enough income, hearing and vision care, cardiovascular prevention, tobacco control, education, social connection, primary care people can actually access, and public systems that reach families before they are already in crisis. The articles themselves are also broader than dementia alone. They point to brain health across the life course, to other neurological and psychiatric conditions, and to overlapping risk factors such as diabetes, hypertension, and obesity. In other words, this is not only a dementia story. It is also a story about stroke, other forms of neurocognitive decline, and the long term conditions that shorten lives and make later brain disease more likely. [1][2][4]

Brain health is not just about what happens after diagnosis.

It is also about the conditions that shape risk, resilience, and decline across the whole of life. [1][2]

That wider frame matters. But dementia remains my anchor, because it makes the failure impossible to miss.

The New Zealand reality

In Aotearoa New Zealand, around 83,000 people are living with dementia mate wareware in 2025. About 6,800 are under 65. By 2050, that number is expected to rise to almost 170,000 of all ages. Alzheimers NZ says dementia could cost the country around NZ$10.65 billion a year by 2050 in 2050 dollars. It also says up to 50% of cases could be prevented by addressing 14 modifiable risk factors early. [3]

That is bad enough on its own.

But the burden is not evenly shared. Alzheimers NZ says dementia is more common in deprived areas, while Māori, Pacific, and Asian peoples are experiencing faster-growing rates. The Public Health Communication Centre has highlighted a clear deprivation gradient, with people living in the most deprived areas having a 60% higher risk of developing dementia than those in the least deprived areas.[3][4]

That means social disadvantage is not just sitting in the background looking unfortunate. It is part of the risk pathway itself. [4]

So no, this is not just about ‘lifestyle choices’.

The same preventable risks do not stay in neat boxes. They do not only increase dementia risk. They also feed stroke, cardiovascular disease, diabetes, poorer mental health, and lowered life expectancy. When governments fail to reduce those risks fairly across the population, the damage spreads across whole lives, not just one diagnosis category. That is one reason these Lancet articles matter. They connect the dots that policy too often keeps separate. [1][2][4]

Why current Government policy deserves a much harder look

This is where the current Government’s approach comes under real pressure.

The Coalition likes the language of discipline, restraint, and control. Treasury’s Budget Economic and Fiscal Update 2025 explicitly described the projected fall in core Crown expenses as ‘expenditure restraint’, with expenses forecast to decline from 32.9% of GDP in 2025/26 to 30.9% by the end of that forecast period. [5]

Treasury’s later Half Year Economic and Fiscal Update 2025 kept the same direction, forecasting core Crown expenses falling from 32.8% of GDP in 2025/26 to 30.5% in 2029/30, largely driven by the Government’s $2.4 billion operating allowances. Finance Minister Nicola Willis also described achieving the Government’s fiscal goals as requiring ‘ongoing restraint and tight control of discretionary spending’.

That may sound prudent in a fiscal update.

But looked at through the lens of brain health, it is something else. If you accept the Lancet argument, and you should, then underinvesting in the conditions that support healthy lives is also underinvesting in lower dementia risk, lower stroke risk, better metabolic health, and better chances of people staying cognitively well for longer. Austerity is not neutral here. It narrows the very foundations that prevention depends on. [1][2][5]

In New Zealand, that matters most where dementia risk is already highest. Cuts to the social and public health foundations of life do not fall evenly. They hit hardest in the communities already carrying more deprivation, more preventable risk, and less margin to absorb another policy failure.

Figure 1 Dementia prevention potential in Aotearoa New Zealand. From Ma’u et al (2021) in Ma’u et al (2024). [4]

I have seen what that looks like up close.

It looks like families carrying risk privately that should have been reduced publicly. It looks like unpaid labour, burnout, lost income, postponed care, transport barriers, and years spent trying to bridge gaps between agencies that each think somebody else should be dealing with it. It looks like a person with Young-onset Dementia being forced through systems that are too old, too narrow, or too fragmented to respond properly.

And I have seen the same pattern across the wider dementia and carer community. People wait too long for diagnosis. They struggle to get respite. They run into arbitrary thresholds, mismatched services, and bureaucratic drift. By the time help comes, the harm has often already spread far beyond the initial health issue.

Prevention means more than saying the word

The contradiction becomes even sharper when you look at tobacco policy.

In February 2024, the coalition Government repealed smokefree endgame measures under urgency. PHCC says the repeal removed measures that would have set a new low nicotine standard, greatly reduced tobacco availability, and created a smokefree generation. Smoking is one of the modifiable risk factors linked to dementia. You cannot talk seriously about prevention while dismantling one of the strongest population-level prevention tools you had. [4][6]

This is exactly the kind of policy incoherence the Lancet articles warn against. A government cannot claim to care about risk reduction and brain resilience while actively weakening one of the clearest public health levers available. [1][2][6]

A new Lancet Public Health comment pushes this argument further. It says dementia prevention should now be treated as a measurable non-communicable disease priority, not a rhetorical add-on. That means embedding dementia risk reduction into existing health and prevention strategies, funding it, monitoring it, and judging progress not just by good intentions but by whether risk factors actually fall and inequities actually narrow. It also warns against relying mainly on individual behaviour change. The strongest prevention measures are often population-level and low-agency: the kinds of policies that reduce harm without depending on people already having enough money, time, health literacy, or spare capacity to protect themselves. [9]

In New Zealand, that should ring alarm bells. We already know dementia risk tracks deprivation and that many of the most important risk factors sit well beyond the clinic. So if the Government is serious about prevention, it should be able to show where dementia risk reduction sits inside wider non-communicable disease policy, how it is being funded, what is being measured, and whether those measures are reducing inequity rather than simply producing another set of warm statements. [4][9]

Prevention is not real if it only starts after diagnosis.
If governments cut public health, weaken tobacco control, squeeze incomes, and leave inequity untouched, they are not doing prevention. They are simply delaying the bill. [2][4][6]

The opportunity New Zealand is choosing to miss

The first Lancet editorial points to modelling suggesting that delaying dementia onset by five years could reduce prevalence and related costs by roughly 40% by 2050. Applied illustratively to New Zealand’s own dementia projections, that would suggest something like 68,000 fewer people living with dementia by 2050. It is not a formal New Zealand forecast, but it gives a clear sense of scale. [1][3]

And that opportunity is not just fiscal.

It is human.

Fewer people pushed into crisis. Fewer whānau trying to hold things together alone. Fewer years of preventable harm piling up before anyone takes it seriously. Fewer people being told, directly or indirectly, that their lives do not fit the categories well enough to count.

The dementia sector itself is saying current approaches are not enough. The refreshed Dementia Mate Wareware Action Plan 2026–2031 says the work is far from complete, sets out a five year roadmap, and identifies five immediate priority areas so dementia is prevented as much as possible and people get the help and support they need. Alzheimers NZ’s January 2026 position papers likewise call for progressive implementation and funding, starting with promoting brain health and improving equitable access to services. [7][8]

Brain health is infrastructure

I keep coming back to one word from the first Lancet article: infrastructure. It argues that brain health should be treated as essential infrastructure. [1]

That is exactly right.

We understand infrastructure when it comes to roads, ports, electricity, and now defence. Governments find the language for that. They find the urgency too.

But when it comes to the social and public health foundations that protect brains over decades, suddenly we are told to be patient, realistic, and fiscally responsible. As if allowing risk to build is the responsible option.

It is not.

It is short term. It is socially costly. And in the long run it is economically foolish.

My challenge to New Zealand’s political parties

• To National, ACT, and NZ First: stop pretending austerity is neutral. If you cut the conditions that protect health, you are not really saving money. You are moving the cost onto families, communities, and future health budgets. Tell the public what your actual brain health and dementia prevention strategy is, beyond coping later with the fallout. [1][2][5]

• To Labour, the Greens, and Te Pāti Māori: do not answer this with softer rhetoric alone. Show what a real cross-government prevention strategy would look like. Be concrete about poverty reduction, housing, tobacco control, hearing and vision access, primary care, transport, cardiovascular prevention, and age and life-stage appropriate support for people with Young-onset Dementia and other neurocognitive conditions. [2][4][6][8]

• To all parties: stop boxing dementia into aged care and stop boxing prevention into slogans. Brain health begins long before old age. If your wider social and economic policy deepens inequity, then it is also brain health policy, whether you admit it or not. [1][2][4]

And to readers

Do not leave this at the level of an interesting (hopefully) article.

• Ask your MP and electorate candidates what their plan is to reduce dementia risk, not just manage dementia once it appears.

• Ask what they will do about poverty, smoking, hearing loss, social isolation, cardiovascular risk, access to diagnosis, and unequal access to support.

• Ask whether Young-onset Dementia is visible in their thinking at all.

• Ask whether they are prepared to fund prevention seriously, or whether they are content to leave families carrying the cost.

The real choice

We can keep talking about dementia as if it is an inevitable wave that will simply roll in harder and harder. We can ignore the other preventable neurological, cardiovascular, metabolic, and life-shortening harms travelling alongside it. We can keep treating those harms as unfortunate, separate, and mostly private.

Or we can be honest.

The question is no longer whether dementia prevention matters. The question is whether governments are willing to operationalise it in measurable, funded, equity-focused ways, or leave it sitting in speeches and strategy documents as another well-meaning slogan. The new Lancet Public Health article, that arrived after drafting this current Substack is very clear on that point: dementia prevention has to be built into real policy, linked to accountability, and tracked in ways that show whether population reach is improving and avoidable inequities are falling (I will cover that idea in more detail in a future article). [9]

That is the warning in these Lancet articles.

It is also the opportunity.

New Zealand should take both seriously. Right now, this Government seems more interested in cutting the scaffolding than in building the resilience.

That needs to change.

Footnotes

[1] The Lancet Neurology. (2026). Europe at a brain health crossroads [Editorial]. The Lancet Neurology, 25(5), 433. Retrieved April 28, 2026, from https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(26)00132-8/fulltext

[2] Chakraborty, S., Feigin, V., Dhamija, R. K., et al. (2026). Advancing brain health equity at the World Health Summit. The Lancet Neurology, 25(5), 442–443. Retrieved April 28, 2026, from https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(26)00122-5/fulltext

[3] Alzheimers NZ. (2026). Facts and figures. Retrieved April 28, 2026, from https://alzheimers.org.nz/explore/advocacy/facts-and-figures/

[4] Ma’u E., Cullum, S., Cheung, G. (2024). The growing burden of dementia in Aotearoa: Scope for prevention. Public Health Communication Centre. Retrieved April 28, 2026, from https://www.phcc.org.nz/briefing/growing-burden-dementia-aotearoa-scope-prevention

[5] The Treasury. (2025). Budget economic and fiscal update 2025. Retrieved April 28, 2026, from https://www.treasury.govt.nz/publications/efu/budget-economic-and-fiscal-update-2025

[6] Hoek, J., DeMello, A.G. (2025). How did Government and Opposition MPs justify and oppose repealing the smokefree endgame measures? Public Health Communication Centre. Retrieved April 28, 2026, from https://www.phcc.org.nz/briefing/how-did-government-and-opposition-mps-justify-and-oppose-repealing-smokefree-endgame

[7] Alzheimers NZ. (2026). Dementia Mate Wareware Action Plan. Retrieved April 28, 2026, from https://alzheimers.org.nz/explore/advocacy/dementia-action-plan/

[8] Alzheimers NZ. (2026). Position papers – January 2026 update [PDF]. Retrieved April 28, 2026, from https://cdn.alzheimers.org.nz/wp-content/uploads/2026/03/Alzheimers-NZ-position-papers-January-2026-update_All.pdf

[9] Salemme, S., Mukadam, N., Bodryzlova, Y., et al. (2026). Operationalising dementia prevention as a measurable NCD priority. The Lancet Public Health, 11, e277–e278. Retrieved April 28, 2026, from https://www.thelancet.com/journals/lanpub/article/PIIS2468-2667(26)00028-9/fulltext

I have just published a second article on Minister Casey Costello’s latest written answers on Young-onset Dementia and the refreshed Dementia Mate Wareware Action Plan 2026-2031.

Those answers were already concerning enough. They still did not show a clear Cabinet response, new funding, a national age-appropriate pathway, or a clear line of implementation responsibility.

But there is now another piece of the puzzle.

On 21 April 2026, during the debate on the Appropriation (2024/25 Confirmation and Validation) Bill - Health, Labour MP Ingrid Leary pressed Casey Costello directly in the House. The exchange matters because it goes to the heart of what the Government has, and has not, done with the refreshed Dementia Mate Wareware Action Plan 2026–2031.

Leary asked whether there was a Cabinet-backed response to the refreshed Dementia Mate Wareware Action Plan 2026-2031, or whether Costello had simply turned up to cut the ribbon.

That is a sharp question. It is also a fair one.

Because seven months after Costello publicly received the refreshed Dementia Mate Wareware Action Plan 2026–2031, the public still has no clear Cabinet answer, no new funding, and no clear Government implementation response.

That matters even more because this was not just any sector document. The refreshed Plan was led by its four Kaitiaki organisations and presented as a five-year roadmap for Government and the health system to act.

Costello still did not say Cabinet had backed the Action Plan

Costello’s answer is worth sitting with carefully.

She did not say Cabinet had endorsed the refreshed Dementia Mate Wareware Action Plan 2026–2031.

She did not say Cabinet had approved funding for it.

She did not say there was a clear Cabinet-backed implementation plan.

Instead, she said that progress in health does not always require Cabinet papers, that Health New Zealand had acknowledged the Action Plan, that the recommendations were being worked through, and that she looked forward to bringing outcomes to the House once Cabinet decisions were made.

That is an extraordinary answer.

Because if Cabinet decisions are still to be made, then the obvious question is this: what exactly has happened to the refreshed Dementia Mate Wareware Action Plan 2026–2031 since September 2025?

At best, this sounds like the plan has been received, noted, and absorbed into a vague work programme.

At worst, it sounds like the Government still has not made a clear decision on it at all.

The same old pilot programmes appears to be doing the work again

When Ingrid Leary asked what had actually changed, especially for people with Young-onset Dementia and their families, Costello again fell back on the existing pilot programmes.

That matters.

Because those pilots were funded in Budget 2022 as part of the earlier Dementia Mate Wareware Action Plan 2020-2025. They were never full implementation of that Action Plan. And they are certainly not the same thing as a funded Government response to the refreshed Dementia Mate Wareware Action Plan 2026-2031.

Yet here we are, in 2026, still being pointed back to the same pilots.

No new plan.

No new budget line.

No clear Cabinet response.

Just the same patchwork of seven regional pilots carrying more and more of the political load.

That is not a sign of progress. It is a sign of drift.

Then came the most revealing line of all

When Ingrid Leary asked specifically about Young-onset Dementia, including respite and employment support for families, Costello said this area did not sit specifically under her delegation.

“In terms of the areas of those with younger-onset dementia, that doesn’t sit specifically under my delegation, so, therefore, I would be unable to respond to those questions.”

— Casey Costello, Appropriation (2024/25 Confirmation and Validation) Bill, Annual Review Debate - Health, 21 April 2026.

That should have stopped people in their tracks.

Because it raises an obvious question.

If Young-onset Dementia does not sit specifically under her delegation, why has she been answering written questions about it, publicly receiving the refreshed Dementia Mate Wareware Action Plan 2026–2031, and speaking about younger people with dementia needing different supports and services?

More importantly, what does that mean for accountability?

Because Young-onset Dementia is exactly the kind of issue that falls through the cracks when no one clearly owns it.

It sits across health, disability, social development, employment, housing, family support, transport, and aged care. That is precisely why it needs clear leadership, not rhetorical hand-passing.

The delegation schedule makes this even more concerning

After reading the House exchange, I went looking for the formal delegation schedule.

I found the official Department of the Prime Minister and Cabinet schedule of responsibilities delegated to Associate Ministers, dated 10 June 2025.

And it is very clear.

Under Health, Casey Costello’s delegated responsibilities include both dementia management and aged care.

That does not sit comfortably at all with her later statement in the House that Young-onset Dementia (YOD) does not sit specifically under her delegation.

Of course, some YOD-related issues overlap with other portfolios. That is true.

But that is not the same as saying it sits outside her delegated responsibility in any meaningful sense. If you hold delegation for dementia management, then at the very least you hold responsibility for the dementia policy side of Young-onset Dementia, especially in relation to the Action Plan, service pathways, post-diagnostic support, navigation, respite, and implementation questions.

So what are we left with?

• Casey Costello is relying on a very narrow and selective reading of her delegation

• or she is politically distancing herself from YOD-specific accountability

• or she is conceptually blurring YOD into broader aged care and generic dementia work

None of those possibilities is reassuring.

The aged care shift is part of the problem

There is another part of Costello’s answer that matters too.

She said there was a larger programme of work around aged care, which carries the bulk of the population living with dementia.

At one level, that is obvious. Most people with dementia are older.

But in this context, it is doing political work.

Because she was not being asked a general question about older people with dementia. She was being asked about the refreshed Dementia Mate Wareware Action Plan 2026–2031 and specifically about YOD.

“There is a larger programme of work around the aged care, which actually carries the bulk of the population of those living with dementia, and so those outcomes I will look forward to bringing to the House once Cabinet decisions are made.”
— Casey Costello, Appropriation (2024/25 Confirmation and Validation) Bill, Annual Review Debate - Health, 21 April 2026.

What that effectively signals is that because most people with dementia are older, the Government’s larger aged care work should count as the main dementia response. That may suit the politics of numbers, but it leaves Young-onset Dementia blurred back into the very system Costello herself had already said was not enough.

And instead of naming a distinct YOD response, she shifted the frame back to aged care and the older majority.

That sits awkwardly with the refreshed Dementia Mate Wareware Action Plan’s own foundations, which say people living with dementia mate wareware and their families and whānau should have access to services no matter who they are, where they live, or what age they are.

That is exactly the pattern many of us have been warning about.

Young-onset Dementia is named.

Then it is blurred back into older-age systems.

Its distinct needs are acknowledged in principle.

But when direct action is demanded, the answer slides back into the familiar language of generic services, existing regional pilot trials, and the bigger aged care picture.

That is how groups get lost in plain sight.

Why this matters

This is not an argument against older people with dementia. They matter deeply, and aged care matters.

It is an argument against using the older majority as a reason not to deal clearly with the needs of those who do not fit that frame.

People with Young-onset Dementia are often in their 40s, 50s, or early 60s. They may still be working. Their partners may be trying to hold jobs together while caring. Some are still raising children. Some are paying mortgages or rent. Many are years away from New Zealand Superannuation.

That is not a minor variation on the same story.

It is a different life-stage reality, and it needs supports and services that match that reality.

If the Minister responsible for dementia management can publicly receive the refreshed Dementia Mate Wareware Action Plan 2026–2031, speak about younger people needing different supports, and then later tell the House that Young-onset Dementia does not sit specifically under her delegation, then something is badly wrong.

So where does this leave us?

It leaves us with a problem that is now harder to explain away.

The refreshed Dementia Mate Wareware Action Plan 2026-2031 still does not appear to have a clear Cabinet-backed response. The Government is still leaning on the old Budget 2022 trial programme as its main evidence of action. And when Young-onset Dementia is raised directly, responsibility becomes blurred, even though the Minister’s own formal delegation includes dementia management.

Figure 1, Dementia Mate Wareware Action Plan 2026 – 2031 Plan at a glance page. Source Dementia NZ, 2025

That is not clarity. It is not accountability. And it is not good enough for people with Young-onset Dementia, their whānau, and supporters.

What I think this now adds up to

At this point, I think the pattern of Government inaction is much harder to explain away, despite Casey Costello’s efforts to do so. I have now, over the three articles looked across Casey Costello’s September 2025 speech at the Alzheimers NZ Conference, two rounds of written parliamentary questions, the proactively released briefing titles, and the 21 April House exchange. My view is that the Coalition Government still has not turned its public recognition of dementia mate wareware, or of the refreshed Dementia Mate Wareware Action Plan 2026–2031, into clear, accountable Government action.

Young-onset Dementia is one of the clearest examples of that failure. But it is not the only one.

The refreshed Dementia Mate Wareware Action Plan 2026–2031 explicitly continues to prioritise Māori, Pacific peoples, people with Young-onset Dementia, and those in remote and rural areas. More broadly, it speaks to the needs of people living with dementia mate wareware, their families, whānau, and care partners across the system. Yet seven months after the Plan was publicly handed to the Minister, there is still no clear Cabinet-backed response, no visible new funding, no clear implementation pathway, and no obvious line of responsibility for delivery.

That is the bigger picture now.

In September 2025, Costello publicly received the refreshed Dementia Mate Wareware Action Plan 2026–2031. She said dementia was not just an aged care issue. She said younger people may need different supports and services. She spoke as though the Government understood that dementia mate wareware required a distinct and serious response.

Seven months on, that recognition still has not been matched by Government action that is clear enough, funded enough, or accountable enough to improve the everyday lives of people living with dementia, their whānau, care partners, and supporters.

That is a crucial point.

Reports, advice, acknowledgements, work programmes, and speeches are not the same thing as accountable Government action. They do not, by themselves, create age-appropriate support, improve respite, strengthen navigation, reduce postcode variation, support employment transition, or make life easier for families carrying the burden of dementia every day.

Instead, what we keep seeing is a pattern. The same Budget 2022 trial programme is still doing most of the visible work. Written answers fall back on generic services, pilots, and NGOs. Cabinet questions are avoided. And when Young-onset Dementia is raised directly in the House, responsibility blurs rather than sharpens, even though Costello’s formal Health delegation includes dementia management.

In my view, this is now looking less like delay alone and more like a political choice to keep dementia mate wareware visible enough to be acknowledged, but not clearly enough owned to require decisive Government action.

That is why this matters.

Because this is no longer just about whether one group has been overlooked, serious as that is. It is about whether the whole dementia sector and community has again been asked to accept recognition instead of response, consultation instead of commitment, and sympathetic language instead of funded action. People living with dementia, their families, whānau, care partners, supporters, and the wider dementia sector have already waited through one Action Plan that was only ever partly implemented. They should not now be asked to wait again while the Government talks, acknowledges, reviews, and defers.

What should happen now

Minister Costello should be asked to clarify a very basic point.

If her formal Health delegation includes dementia management, why did she tell the House that Young-onset Dementia does not sit specifically under her delegation?

She should also be asked to answer plainly whether Cabinet has backed the refreshed Dementia Mate Wareware Action Plan 2026-2031, what specific actions apply to Young-onset Dementia, and what new funding, if any, the Government intends to commit.

Call to action

If this concerns you, do not let it slide past.

• Ask Minister Costello to explain how Young-onset Dementia can fall outside her specific delegation if she holds delegated responsibility for dementia management.

• Ask whether Cabinet has endorsed the refreshed Dementia Mate Wareware Action Plan 2026–2031.

• Ask what specific actions in the Plan will be funded and implemented for people with Young-onset Dementia, their whānau, and supporters.

• Ask whether the Government is treating dementia mate wareware, including Young-onset Dementia, as more than an aged care issue in practice, not just in speeches.

• Share this issue with others in the dementia community, with carers’ networks, and with organisations that say they support age-appropriate and life-stage-appropriate care.

• Raise it with your local MP. Without public pressure, there is a real risk that Young-onset Dementia will again be acknowledged, but not acted on.

Conclusion

On 21 April 2026, in the House, Associate Minister of Health Casey Costello said Young-onset Dementia did not sit specifically under her delegation, and suggested the refreshed Dementia Mate Wareware Action Plan 2026–2031 was being left with Health New Zealand to be absorbed into its existing work. She still did not give a direct answer to the questions she was asked.

Casey Costello’s House answer did more than avoid a direct response.

It exposed a deeper problem.

The formal delegation schedule is clear. It shows that her Health responsibilities include dementia management and aged care.

Her House answer was not clear.

That gap matters even more because the refreshed Dementia Mate Wareware Action Plan 2026 - 2031 was designed not just to guide action, but to hold decision-makers accountable for making progress on its priorities.

Today is 23 April 2026.

Another 22 days have now passed since I published that first article, titled Young-onset Dementia has been named again. Minister, where is the action?

With three people developing dementia every hour in Aotearoa New Zealand, that is another 1,584 people in just those 22 days. If around 8 percent of people with dementia first experience it under the age of 65, that means around 127 more people will have first experienced Young-onset Dementia in that time.

Put another way, since Associate Minister of Health Casey Costello was presented with the refreshed Dementia Mate Wareware Action Plan 2026–2031, more than 15,180 New Zealanders will have developed dementia.

Since my first article, Labour MP Ingrid Leary has asked a further 12 written parliamentary questions to Minister Costello about Young-onset Dementia, age-appropriate services, funding, and the status of the refreshed Action Plan.

Those answers do not clear things up.

If anything, they deepen the concern.

They suggest there is still no clear national, age-appropriate and life-stage-appropriate pathway for people with Young-onset Dementia, their whānau, and supporters. They suggest there is still no ring-fenced funding. They suggest the Government is still leaning on the same Budget 2022 pilots as evidence of progress. And they still do not give a straight answer on whether Cabinet has even endorsed the refreshed Action Plan.

That matters because none of this is abstract.

Young-onset Dementia, or YOD, refers to dementia experienced before the age of 65, not necessarily diagnosed before 65. People affected are often in their 40s to early 60s. Many are still in paid work when symptoms begin. Many have partners trying to stay in paid work while also taking on progressively more care. Some are still raising children. Some are paying mortgages or rent. Many are years away from New Zealand Superannuation. YOD is not simply dementia happening a bit earlier. It creates a different set of pressures, and it needs age-appropriate support and services that fit that stage of life.

At the conference, Casey Costello said dementia was not just an aged care issue, and that younger people may need different supports and services.

More than six months on from the public handover of the refreshed Dementia Mate Wareware Action Plan 2026–2031, the public still has no clear answer on Cabinet endorsement, funding, or a national Young-onset Dementia pathway.

The refreshed Action Plan itself recognises that people with Young-onset Dementia lack age-appropriate services.

Minister Casey Costello speaking at the Alzheimers NZ Conference on 24 September 2025, when she received the refreshed Dementia Mate Wareware Action Plan 2026–2031. Source: Alzheimers NZ, 2025.

That is why these latest answers matter.

The Cabinet question is still being avoided

The clearest example of the Minister avoiding a direct answer is also one of the simplest questions she could have answered.

In Questions 12387 and 12388, Ingrid Leary asked whether Cabinet has endorsed the refreshed Dementia Mate Wareware Action Plan 2026–2031, and if so, on what date, and which parts, if not all.

Those should have been straightforward questions to answer.

Instead, Minister Costello pointed to proactively released titles of advice on Ministry of Health and Health New Zealand websites.

That is not a real answer.

It does not say yes. It does not say no. It does not say when. It does not say whether the refreshed Action Plan has even gone to Cabinet. It simply points the reader elsewhere.

That is why these answers are not just unhelpful. They are evasive.

I then checked Minister Costello’s proactively released briefing titles from September 2025 through to March 2026. None of the visible titles mention dementia, mate wareware, the refreshed Action Plan, or Young-onset Dementia. A few titles relate more generally to older people, carers, or aged care. But there is no visible sign in those released titles of a ministerial briefing trail on the refreshed Dementia Mate Wareware Action Plan 2026–2031 or Cabinet consideration of it.

Some titles are withheld under the Official Information Act, so that cannot be ruled out completely.

But on the face of the released material, there is still no visible indication of focused ministerial work on the refreshed plan.

And after more than six months, that matters.

If Cabinet has endorsed the refreshed Action Plan, the Minister should be able to say so. If it has not, the public is entitled to know that too.

Instead, we are left with the strong impression that there is still no visible Cabinet-backed response to the refreshed plan.

The same pilots are still doing most of the work

Another theme running through these answers is that the Minister is still leaning heavily on the same seven regional pilots funded in June 2023 under the Budget 2022 implementation package for the earlier Dementia Mate Wareware Action Plan 2020–2025.

That matters because the Budget 2022 package was never full implementation of the earlier Action Plan. It was limited funding. Useful in some areas, yes. But still limited. I made that point in my earlier article on the shift from national plan to pilot patchwork, and these latest answers only reinforce it.

Now, years later, those same pilots are still being used as evidence of action on dementia mate wareware, including Young-onset Dementia, and in effect are being made to carry both the old Action Plan and the refreshed one as well.

That is not a sign of new momentum.

It looks much more like the same limited implementation package being stretched further and further, while the Government avoids committing to anything new.

That is one of the clearest messages running through these latest answers. The Minister is still relying on the Labour Government’s Budget 2022 $12 million allocation for initial implementation of the 2020–2025 Action Plan, even though that was never full implementation of that Action Plan, let alone implementation of the refreshed 2026–2031 plan.

A national YOD pathway is still missing

That becomes even clearer when you look at the actual service answers.

In Question 12384, Ingrid Leary asked whether there will be a national, age-appropriate Young-onset Dementia pathway, and if so whether there will be ring-fenced funding to support it.

The Minister did not answer that question directly. Instead, she referred back to earlier answers, specifically Questions 12380 and 12382. In turn, those answers eventually lead back to her answer to Question 12376.

That chain of cross-reference matters, because none of those answers describe a national YOD pathway.

Collectively, they describe a mix of pilots, generic services, local pathways, GP referral, memory clinics, needs assessment services, post-diagnostic support, navigation, respite, and NGO support.

That is not a coherent national pathway. It is a patchwork.

The same applies to Questions 12381 and 12382, which asked whether people with Young-onset Dementia can access age-appropriate care regardless of location, and whether there are any publicly funded age-appropriate services nationally, specifically for people living with Young-onset Dementia.

Again, when we eventually arrive back at Question 12376, the answers do not establish that.

They mainly point back to the same seven regional pilots funded in Budget 2022 as part of the previous Action Plan’s initial implementation funding, not to anything new established or funded by the current Coalition Government and Minister Costello. I have yet to find any evidence that the current Coalition provided new funding for the previous Action Plan in Budget 2024 or Budget 2025. The Minister also points to generic services through Health New Zealand funding of ‘several dementia NGOs, some of which offer services or programmes specifically for younger people’. Those NGOs include Dementia NZ and Alzheimers NZ’s 17 regional branches, which have for two years been seeking an additional $127.3 million over four years, even as nearly 40,000 New Zealanders are estimated to urgently need day-to-day dementia support but cannot access it.

That is not the same as a national, age-appropriate, life-stage-appropriate response.

It is still a postcode issue. It is still a patchwork issue. And it is still a problem. In practice, that can mean people with YOD and their families are left to navigate diagnosis, respite, day support, home support, employment loss, income loss, and later care through a system that varies by region and often defaults to services designed mainly for much older people.

One Christchurch service is not a national response

Question 12376 is a good example of how the Minister’s wording can sound broader than the public record really supports.

In that answer, she says one of the service trials includes a respite day programme in the South Island specifically designed to support people with younger onset dementia.

On closer checking, the public material does suggest there is one Young-onset-specific Christchurch service within the broader Te Waipounamu HomeShare pilot created by Presbyterian Support Upper South Island. That is important and worth acknowledging.

But that is not the same as a dedicated Young-onset Dementia pilot programme overall.

And it is certainly not evidence of a national YOD service response.

That distinction matters. Because if readers are left with the impression that a broader Young-onset Dementia-specific service system is already operating, that would give a much larger impression of YOD-specific provision than the public record really supports.

What the public material appears to show is something much narrower: one Young-onset-specific Christchurch service inside a broader South Island pilot arrangement.

That is better than nothing. But it is not the same as the national, age-appropriate and life-stage-appropriate support system people with YOD actually need. One local service, however welcome, does not help most people with YOD across the country if there is no clear national plan behind it.

The funding is still not visible

The funding answers remain just as concerning.

Question 12380 asked how the public can know whether any funding is going towards supporting people living with Young-onset Dementia, and how that spending is tracked.

The answer was that Health New Zealand does not publish expenditure specifically for services which support people with younger onset dementia, although some data on dementia units records the age of residents.

That is revealing.

It means the public still cannot clearly see what is being spent specifically on Young-onset Dementia. There is still no transparent public line of sight.

And when that answer is read alongside the earlier answer that Health New Zealand does not hold a specific or ring-fenced budget for Young-onset Dementia, the picture becomes clearer still.

YOD is being named. But it is still not being funded, tracked, or planned for in a way that gives confidence.

That is not a minor technical issue. If spending cannot be clearly seen, accountability is weakened as well. It becomes harder for the public to know whether YOD is actually being prioritised, harder to compare regions, and easier for governments to talk about commitment without showing what has really been funded.

Employment exit and income loss are still being left to the side

One of the bluntest answers was to Question 12379, which asked what national publicly funded support services exist to support those with Young-onset Dementia to navigate employment exit and loss of income.

The Minister’s answer was that the Ministry of Social Development does not have any specific support services for those who have young onset dementia.

That is stark.

For people with YOD, employment exit and income loss are not side issues. They are often central issues. Many people are still in work when symptoms begin. Many households are still relying on wages, not retirement income. Many carers are also trying to stay in work while taking on more support. Mortgages, rent, school costs, transport, and day-to-day living do not disappear because someone develops dementia under 65.

So when the answer is effectively that there are no specific national publicly funded services to help navigate that reality, it highlights again how far the system still is from being genuinely life-stage-appropriate.

The behaviour support answer is also revealing

The answer on behaviour therapy has a familiar shape too.

In practice, ‘behaviour therapy’ in dementia usually means non-drug support to understand and respond to behaviour changes, rather than one single standard therapy model.

Question 12378 asked what supports exist to support those with Young-onset Dementia to access behaviour therapy, if required.

The answer points to GPs, mental health or memory clinics, local needs assessment services, and NGOs.

Again, that is not a Young-onset-specific answer. It is a generic routes answer.

It may describe some ways a person could try to access help. But it does not describe a Young-onset-specific pathway people can rely on. It does not describe how consistent access is across the country. And it does not tell us whether those routes are actually designed around the needs of younger people with dementia and their households.

This pattern keeps repeating.

Generic entry points are being presented in place of a designed response.

These answers still sit awkwardly beside Costello’s own speech

That is what makes the contrast with Casey Costello’s Alzheimers NZ Conference speech in September 2025 more noticeable.

At that conference, when she received the refreshed Action Plan, she said that she and Health Minister Simeon Brown wanted a more joined-up approach to dementia, including better support, navigation, and respite. She also said dementia was not just an aged care issue, and that younger people may need different supports and services.

Those were important remarks.

They signalled recognition of the problem. They suggested YOD was in view. They suggested that the refreshed Action Plan might actually lead somewhere.

But these latest written answers still do not identify any specific new YOD actions. They still do not identify ring-fenced YOD funding. They still do not describe a national, age-appropriate YOD pathway. And they still do not clearly tell the public whether Cabinet has endorsed the refreshed Action Plan at all.

That is why the gap between speech and action now looks harder to ignore.

So what do these 12 answers add up to?

Taken together, they suggest several things.

First, there is still no clear national, age-appropriate and life-stage-appropriate Young-onset Dementia pathway for people with YOD, their whānau, and supporters.

Second, there is still no ring-fenced YOD funding, and no transparent way for the public to know what is actually being spent specifically on YOD.

Third, the Government still appears to be relying on the same limited Budget 2022 pilots and generic services rather than pointing to new funding, a new delivery structure, or any new nationwide implementation decision.

Fourth, the answers on Cabinet are still evasive, and the proactively released briefing titles do not show any visible ministerial trail on the refreshed Action Plan, dementia, mate wareware, or Young-onset Dementia from September 2025 through to March 2026.

Fifth, the South Island HomeShare point appears much narrower than the parliamentary answer suggests. One Christchurch service inside a broader pilot is not the same as a dedicated YOD pilot programme overall, and certainly not the same as a national YOD response.

In summary, the latest answers still do not show a clear Cabinet response, ring-fenced YOD funding, a national YOD pathway, or a clear line of implementation responsibility. Rather than resolving the concerns raised by the earlier round of questions in March 2026, they deepen them. They add to concerns about Cabinet inaction, lack of ring-fenced funding, no clear national YOD pathway, and continued reliance on pilots and generic services.

This is starting to look like a pattern

That is perhaps the bigger concern now.

The issue is no longer just that one answer was weak, or that one question was sidestepped.

Across multiple rounds of parliamentary questions, the pattern is becoming clearer:

YOD is acknowledged in words.

Generic services are pointed to.

Pilots are leaned on.

NGOs are expected to fill gaps.

Funding is not made visible.

Cabinet is not clearly answered.

And the age-appropriate, life-stage-appropriate national response still does not appear.

That is not what real progress looks like.

What should happen now

The Government, Ministry of Health and Health New Zealand should answer plainly.

Has Cabinet endorsed the refreshed Dementia Mate Wareware Action Plan 2026–2031 or not?

If so, on what date?

If not, why not?

What specific actions in the refreshed Action Plan apply to Young-onset Dementia?

Will there be a national, age-appropriate and life-stage-appropriate YOD pathway?

What funding has been allocated specifically for this?

How is that spending being tracked?

Who is responsible for delivery?

Those are not unreasonable questions. They are basic questions. And after seven months, they should not be difficult to answer.

Call to action

If you care about Young-onset Dementia, or dementia support more broadly, now is the time to keep asking questions.

· Ask your local MP whether the refreshed Action Plan has gone to Cabinet and whether Cabinet has endorsed it.

· Ask Minister Costello what specific YOD actions will be funded, if any.

· Ask Health New Zealand whether it is developing a national, age-appropriate and life-stage-appropriate YOD pathway.

· Ask why there is still no ring-fenced YOD funding, and no clear public tracking of YOD spending.

· Share this article with others.

· Raise it with dementia organisations, community groups, and the media.

· If you have lived experience of Young-onset Dementia, share your story if you feel able and comfortable to do so.

· If you know a person with Young-onset Dementia, their whānau, or a supporter, ask what you can do to support them. Ask first, rather than assuming.

Conclusion

Young-onset Dementia should not keep being acknowledged in words while left without clear planning, delivery, funding, and accountability.

If the Government wants credit for recognising YOD, then it needs to do more than say it is a priority group.

It needs to show the actions.

It needs to show the funding.

It needs to show the pathway.

It needs to show who is accountable.

And it needs to answer plainly whether the refreshed Dementia Mate Wareware Action Plan 2026–2031 has even gone to Cabinet, let alone been endorsed by it.

But people with Young-onset Dementia, their whānau, and supporters have already waited patiently through one Action Plan that was only ever partly implemented, and for many, much longer than that to be properly seen, listened to, and met not just with empathy, but with real action.

Until then, these latest answers do not provide reassurance.

They add to the concern that Young-onset Dementia is still being noticed at the edges, but not yet addressed with the clarity, seriousness, and urgency it requires.

And for people living with Young-onset Dementia, their families, and their supporters, that gap is still not abstract.

It is lived every day.

‘Ninety-Five Per Cent’

Author: not credited

This is a strong opening article because it pushes back against one of the most common stereotypes about dementia: that it erases the person. Instead, the article introduces five people living with Young-onset Dementia in Petone, Lower Hutt and shows them as people with humour, history, pride, skill, interests, and relationships still very much intact. It is one of the best articles in the issue for reminding readers that dementia may change life, but it does not reduce someone to a diagnosis.

• The article profiles five people aged 52 to 73, each living with Young-onset Dementia but each presented first as a full person.

• Pat rejects the idea that dementia means losing intelligence and says he spends only five per cent of his week thinking about dementia.

• Jack, Leanne, and Linda each show that competition, reading, art, exercise, humour, and connection still matter.

• Fin’s story shows the sudden practical shock of YOD, including lost work, housing stress, and social isolation.

• The Petone group matters because it offers a place where people do not have to explain their pauses, and where dementia is not treated as ‘the end’.

‘Age-appropriate’ support in Young Onset Dementia: the difference between coping and crisis

Author: Paul Singh

As one of the contributing authors, and writing at Dementia NZ’s invitation, I wrote this article to make a direct policy point: Young-onset Dementia support must fit the reality of working-age life, not assumptions built around frail older age. The article argues that by the time families finally get a diagnosis, they may already have lost income, confidence, time, and options. It is intended to show why age-appropriate and life-stage-appropriate support is not an optional extra, but a basic requirement if families are to avoid preventable crisis.

• YOD often arrives while people are still working, parenting, paying mortgages, and carrying major whānau responsibilities.

• Families can spend years moving through delayed and inconsistent diagnosis pathways before they get clear answers.

• The article notes New Zealand research suggesting an average 3.6-year wait from first symptoms to formal YOD diagnosis.

• It sets out practical supports needed, including faster diagnosis, automatic post-diagnosis navigation, flexible respite, whānau support, and suitable later-care options.

• Its central argument is simple: age-appropriate support is the difference between coping and crisis.

‘We could do this here’

Author: Darral Campbell

Darral Campbell’s article is one of the most useful in the edition because it looks beyond the immediate problem and asks what a better system could actually look like in practice. Drawing on research visits to Canada, Scotland, and the Netherlands, she shows that age-appropriate YOD support is not a fantasy. It already exists elsewhere. Her argument is not that Aotearoa New Zealand should copy another country wholesale, but that the core principles of continuity, specialisation, and coordination are transferable.

• Campbell argues that YOD services in Aotearoa remain limited, inconsistent, and too often folded into older persons’ services that do not fit.

• Her research found that the strongest models support people across the whole dementia journey, not just at diagnosis or crisis points.

• She highlights the Dutch Florence Centre for Specialised Care in Early Onset Dementia at Mariahoeve, Netherlands, where community support, respite, and residential care are linked through one specialist pathway.

• Key ingredients include specialist teams, linked pathways, continuity of relationships, age-appropriate environments, and support for care partners and children.

• Her bottom line is that the real issue is not population size but whether we are willing to organise and fund support differently.

‘I went places I never expected to go’

Author: Alister Robertson QSM

This article is one of the warmest and most quietly hopeful articles in the edition. Alister Robertson writes about how dementia changed his life, but he refuses the usual script that everything simply narrows. Instead, he describes how staying socially connected, taking part in groups, and being open to new experiences led him into advocacy, public speaking, and forms of participation he would never have imagined before diagnosis.

• Robertson begins by challenging the assumption that dementia only shrinks life.

• Advice to keep doing what he could still do, reduce stress, and stay connected shaped the direction of his life after diagnosis.

• Peer support became a pathway into advocacy, public speaking, disability forums, and wider conversations.

• He describes drumming and other activities as important because rhythm, participation, and social connection still work, even when words are harder.

• The article’s key message is that dementia changes how people contribute, but it does not end contribution, growth, or surprise.

‘A Daughter’s Experience of Young Onset Dementia’

Author: not credited; story centred on Fiona Faithfull

This is one of the strongest whānau articles in the whole edition. Fiona Faithfull’s account shows what Young-onset Dementia can look like inside family life: delayed diagnosis, emotional confusion, caring while trying to build your own family, and the slow realisation that love and effort alone are not enough to meet increasing needs. It is painful, grounded, and very recognisable for many families.

• Fiona remembers her mother Carol as intelligent, patient, community-minded, and deeply involved in family and local life.

• Early signs were initially treated as anxiety, depression, or menopause before Carol was eventually diagnosed with Alzheimer’s disease at 53.

• Fiona says her mother could not accept or understand the diagnosis, which robbed the family of some of the conversations they might otherwise have had.

• The article shows the strain of caring while Fiona was also becoming a mother herself, including exhaustion, distress, and conflict.

• Later, seizures and rising care needs led to full-time care, and Fiona ends by telling other carers that their love and effort matters, even when it does not feel visible.

‘Support where you are’

Author: not credited

This article is especially useful because it explains why the Young Onset Dementia Aotearoa Trust matters, particularly for people outside the main centres or for families trying to navigate YOD while still working and holding everything else together. It shows that specialist support does not have to mean a big national institution. It can also mean practical, well-designed guidance, connection, and age-appropriate spaces.

• YODAT was established because younger people with dementia were being pushed into services designed for people decades older.

• Its goal is to help people with YOD retain belonging, autonomy, and meaningful activity for as long as possible.

• The Wellington programme is built around mid-life adult interests and includes cognitive stimulation, shared meals, and structured activity.

• The Trust also provides website-based guidance and national online support groups for people with YOD and for whānau.

• A major strength is that it recognises geography, work, and stage of caring, and offers support that says clearly: you do not have to struggle alone.

‘Understanding Alzheimer’s disease: diagnosis, timing and what it means for families’

Author: Dr Campbell Le Heron

This is the most clinical article in the issue, but it is also one of the most important. Dr Campbell Le Heron explains, clearly and accessibly, the difference between ‘dementia’ and ‘Alzheimer’s disease’, why diagnosis is not always straightforward, and why clarity matters so much for people and whānau. It gives the issue a strong clinical anchor without losing sight of the emotional and practical reality families are living through.

• Dr Le Heron explains that dementia is not itself a disease, but a description of cognitive changes affecting daily life and independence.

• He makes clear that Alzheimer’s disease is one cause of dementia and that it does not always begin with memory problems.

• The article stresses that good assessment depends on clinical history, whānau input, observation, examination, and careful interpretation over time.

• It outlines newer tools such as spinal fluid tests, amyloid PET scans, and emerging blood tests, while noting that access remains limited in Aotearoa New Zealand.

• Its most important message is that diagnostic clarity helps, but planning, support, coordination, and compassion remain just as important as any test or treatment.

What this edition gets right

What this edition of Mind Matters does well is show that

Young-onset Dementia is not a side issue or a rare variation that can be squeezed into older-age systems and assumptions.

It is a distinct life-stage reality. People are still in the middle of life when it arrives. They are still workers, parents, partners, carers, advocates, volunteers, and active members of their communities.

The edition also does something that policy debates often fail to do: it places lived experience, whānau experience, service design, and clinical knowledge alongside each other rather than treating them as separate conversations.

That alone makes it worth reading in full.

Five themes I would carry into any wider discussion of this Mind Matters edition

1) YOD arrives in the middle of life.
Again and again, the articles show people still working, parenting, paying mortgages, maintaining relationships, and trying to hold everyday life together when dementia enters the picture.

2) The system still defaults to old-age assumptions.
Several articles return to the same mismatch: delayed diagnosis, poor-fit services, and support settings built for people much older than those living with YOD.

3) People with YOD remain whole people.
This edition is strong at showing intelligence, humour, identity, skill, contribution, and ongoing personhood, rather than reducing people to symptoms.

4) Whānau and care partners carry enormous burdens.
The issue repeatedly shows the emotional, financial, relational, and practical load placed on partners, children, and wider family.

5) Age-appropriate, connected support is the real test.
Whether the article is personal, service-focused, or clinical, the common thread is the need for timely diagnosis, navigation, continuity, purposeful support, and suitable later-care options.

Overall, this is a strong and worthwhile Mind Matters edition. It gives busy readers a quick way into the realities of Young-onset Dementia, but it also rewards reading cover to cover. If you want to understand why YOD needs to be taken more seriously in Aotearoa New Zealand, this edition is a very good place to start.

Tomorrow is Tuesday 31 March 2026.

That means six months and one week have now passed, and we still have no clear public statement telling us what the Government or Cabinet plans to do about the refreshed Action Plan. We still do not know whether Cabinet has endorsed it. This more than six-month period of inaction compares poorly with the then Labour Government, where Associate Minister of Health Dr Ayesha Verrall received the 2020–2025 Action Plan in September 2021 and had it endorsed by Cabinet in November 2021.

Presently, we still do not know which parts, if any, of the current refreshed Action Plan the Government intends to act on. We still do not know what will be funded, what will be implemented, who will be responsible, or what timeframes apply. The refreshed Action Plan itself says decisive government action is now needed, and that success depends on adequate, dedicated, and sustainable funding for each priority action.

That matters for the whole dementia community. Dementia isn’t waiting for the Minister and Cabinet to make up their mind. According to University of Auckland research commissioned by Alzheimers NZ, three more New Zealanders are affected by dementia every hour. That’s 72 people per day, around 500 people per week, 2,190 people per month, and a further 26,280 people will develop dementia each year. By 2050, if nothing is done four New Zealanders will develop Dementia each hour, with the number of people living with dementia rising from 83,000 in 2025 to around 170,000 in 2050.

Put another way, since Associate Minister of Health Casey Costello was presented with the refreshed Dementia Mate Wareware Action Plan 2026 – 2031 more than 13,600 New Zealanders have developed dementia.

With around 8 percent of people with dementia first experiencing their dementia aged under 65, in these six months and seven days more than 1,000 New Zealanders will have first experienced Young-onset Dementia.

That should matter for all New Zealanders, because 1 in 4 New Zealanders die with Dementia, and WHO lists dementia as the second biggest cause of death in New Zealand.

But it matters especially for people with Young-onset Dementia, their families, and their supporters.

In New Zealand, Young-onset Dementia (YOD) usually refers to dementia experienced before the age of 65, not necessarily diagnosed before 65. People affected are often in their 40s to early 60s. Many are still in paid work when symptoms begin. Many have partners trying to remain in paid work while also taking on progressively more care. Some are still raising children. Some are paying mortgages or rent. Many are years away from New Zealand Superannuation. YOD is not simply dementia happening a bit earlier. It creates a different set of pressures, and it needs age-appropriate support and services that fit that stage of life. The refreshed Action Plan itself says that people with Young-onset Dementia lack age-appropriate services.

That is why Minister of Seniors and Associate Minister of Health, Casey Costello’s recent answers to three Parliament Written Questions from Labour MP and Seniors spokesperson Ingrid Leary matter. They were an opportunity to tell the public whether the Government has understood that reality and whether it is prepared to act on it.

Instead, what we got was something that will feel familiar to many in the YOD community.

Recognition in words. Very little in the way of clear action.

We have seen this pattern before

The previous Dementia Mate Wareware Action Plan 2020–2025 was endorsed by Cabinet in November 2021 under the then Labour Government. The public record is also clear that additional funding would be required to fully implement it.

In Budget 2022, this Action Plan received $12 million over four years. That funding supported implementation activity including post-diagnostic support, navigation, respite-related pilots, and wider network and advisory work. It mattered. But it was never full implementation funding. I wrote about it here:

That is part of the reason people are wary now.

We have seen an Action Plan endorsed before. We have seen limited funding before. We have seen pilots and partial progress before. We have also seen what happens when that does not turn into a fully funded, system-wide response.

Alzheimers NZ said publicly in September 2025 that the first plan had been endorsed, had received some limited funding in 2022 to support pilot projects, but that no further action or funding had followed.

Budget 2024 still shows the existing tagged line for ‘Dementia Mate Wareware Action Plan - Implementation Support Funding’ at $3.660 million in each of the outyears listed, rather than a fresh uplift attached to the Action Plan. On the public record, there does not appear to have been any new or extra Action Plan funding from the Coalition in Budget 2024 or Budget 2025.

So when the current Government goes quiet, and then the Minister offers vague answers, people are not imagining the pattern. They have seen it before.

The main question was not really answered

In Question 7306, Ingrid Leary asked what actions, if any, under the refreshed Dementia Mate Wareware Action Plan 2026–2031 address Young-onset Dementia.

That is a fair and straightforward question.

If there were clear YOD actions, the Minister could have named them. She could have said there will be a national YOD service and support pathway. She could have pointed to age-appropriate post-diagnostic support, family-centred navigation, respite options that fit younger households, workforce initiatives, or some other specific response.

Instead, her answer said the refreshed Action Plan was developed by the lead dementia NGOs and the Mate Wareware Advisory Rōpū, and that the refreshed Action Plan prioritises people with young or early onset dementia as one of its key focus groups.

But that is not the same as answering the question.

The question asked for actions. The answer did not identify any.

Yes, the refreshed Action Plan does clearly recognise Young-onset Dementia as an area of concern. It says people with Young-onset Dementia lack age-appropriate services. But saying a group is a priority is not the same as saying what will now be done for that group. It does not tell us what will change on the ground. It does not tell us who is responsible. It does not tell us whether there is funding behind any of it.

In plain terms, this answer did not address the substance of the question.

The budget answer was clearer, and more revealing

In Question 7304, Ingrid Leary asked what budget, if any, Health New Zealand has set aside for supporting service delivery pathways for people living with Young-onset Dementia.

This answer was more direct.

Casey Costello said Health New Zealand does not hold a specific or ring-fenced budget for Young-onset Dementia. She added that some regions may allocate a small budget for local individual services, but that dementia-related services are included within broader system-level allocations, including older people’s health services and aged residential care.

That is an answer. It is also a very revealing one.

It tells us that YOD is still not being funded as a distinct area of need. Instead, it is being absorbed into broader service and funding streams, many of which were designed mainly around older populations. That may make administrative sense on paper. But for people living with YOD and for the families trying to support them, it goes a long way towards explaining why so many do not fit the system very well.

Because too often they do not.

If there is no ring-fenced YOD funding, there is no clear national signal that age-appropriate services must be built. There is no easy way to track what is actually being spent on YOD. There is no straightforward way to measure whether younger people are getting the support they need. And there is no simple line of accountability when those supports remain patchy, inconsistent, or absent.

That is not a minor technical detail. It goes to the heart of the problem.

A list of services is not a pathway

In Question 7305, Ingrid Leary asked what Health New Zealand service delivery pathways exist for people living with Young-onset Dementia.

Again, that should have been a chance to explain how a younger person with dementia moves through the system. From first symptoms, to assessment, to diagnosis. From diagnosis, to post-diagnostic support, to respite, to home and community support, to more intensive care if needed. It should have been a chance to explain whether an actual YOD pathway exists in any meaningful national sense.

But that is not what the Minister described.

Instead, she listed a mix of generic services and entry points. GP diagnosis. Cognitive impairment pathways. Carer support. Post-diagnostic support and navigation. Home and community support. Aged residential care. NASC. NGO information and programmes.

That is not a pathway. It is a list.

More importantly, she said service delivery pathways and service availability depend on where the person resides. That is really an admission that access is still heavily shaped by geography. In other words, it is still a postcode lottery as to whether you get age-appropriate and life stage appropriate YOD support and services.

That is not reassuring.

It suggests that what exists is still a patchwork of generic services, local variation, and older persons’ framing, dementia pathways and service design. That sits awkwardly beside the refreshed Action Plan’s own emphasis on more joined-up support and on addressing the gaps facing groups such as people with Young-onset Dementia.

For YOD, that matters a great deal. Younger people with dementia often need support with employment exit, income loss, family strain, younger peer connection, age-appropriate day support, flexible respite, behaviour support, home support that fits a younger household, and eventually residential options that do not simply place them in settings built around much older age.

If the Minister cannot point to a defined national YOD pathway, it is hard to avoid the conclusion that no such pathway yet exists in any clear or consistent form.

This is what the answers really show

Taken together, Casey Costello’s answers tell us several things.

1. First, Young-onset Dementia can now be named as a priority group without any actual YOD actions being identified publicly.

2. Second, YOD still does not have specific ring-fenced funding.

3. Third, what is being described as a pathway looks much more like a patchwork of generic services, regional variation, and older persons’ structures than an age-appropriate national response.

That is not a sign of a system that has properly planned for Young-onset Dementia. It is a sign of a system that is still trying to fit younger people into models that were not designed around their needs.

For the YOD community, there is unfortunately nothing surprising about that.

We are visible enough to be mentioned.

Not visible enough to be properly planned for.

The Government has had six months

This is what makes the silence so concerning.

Casey Costello received the refreshed Dementia Mate Wareware Action Plan 2026–2031 on 24 September 2025. Six months later, we still do not know whether the Government endorses it. We still do not know what Cabinet intends to do with it. We still do not know whether there will be any new funding. We still do not know what, if anything, the Coalition plans to deliver for Young-onset Dementia specifically.

That silence is harder to overlook because, when Casey Costello received the refreshed Action Plan at the Alzheimers NZ Conference on 24 September 2025, she explicitly acknowledged that younger people with dementia may need different supports and services and said she did not want dementia to be treated purely as an aged care issue. She also described the refreshed Action Plan as a road map for government action. Six months later, her written answers still did not identify any specific YOD actions, any ring-fenced YOD funding, or any clear national YOD pathway.

That is not good enough.

The previous Action Plan was endorsed by Cabinet in November 2021 after being presented to Associate Health Minister Dr Ayesha Verrall in September 2021. That is two months, not six months and counting with the refreshed Action Plan. It received limited funding in the Labour Government’s Budget 2022. The refreshed Action Plan has now been publicly handed to the Minister. The Action Plan itself says delayed action will make the challenge harder and more expensive. Yet six months on, the public still has no clear answer about what the Government intends to do.

The issue now is not whether Young-onset Dementia can be acknowledged in principle.

The issue is whether the Government is prepared to act.

What should happen now

The Government and Health New Zealand should answer plainly.

Has Cabinet endorsed the refreshed Dementia Mate Wareware Action Plan 2026–2031 or not?

If so, which parts?

What specific actions apply to Young-onset Dementia?

Will there be a national, age-appropriate YOD pathway?

What funding has been allocated?

Who is responsible for delivery?

What timeframes apply?

Those are not unreasonable questions. They are basic questions. After six months, they should not be difficult to answer.

I will link to some of my earlier Substack articles below this article for readers who want more background on Young-onset Dementia, age-appropriate support, funding gaps, and why this matters in practice. But the core point here is simple enough.

The Government has now had the refreshed Action Plan for six months.

The public still does not know what the Government plans to do.

Call to action

If you care about Young-onset Dementia, or about dementia support more broadly, now is the time to start asking questions.

• Ask your local MP and Minister Costello whether the refreshed Action Plan will be endorsed by Cabinet. Has it even been taken to Cabinet?

• Ask Minister Costello by email what specific YOD actions will be funded, if any, for people with YOD, their whānau and supporters. Copy in Minister of Health Simeon Brown, the Prime Minister and other party leaders.

• Ask Health New Zealand whether it is developing a national, age-appropriate YOD pathway.

• Ask each of the above why there is still no ring-fenced YOD funding.

• Share this issue with others.

• Raise it with dementia organisations, community groups, and the media.

• If you have lived experience of Young-onset Dementia, share your story if you feel able and comfortable to do so.

• If you know a person with Young-onset dementia, their whānau or supporter, ask what you can do to support them. Please ask first, rather than assume what they need.

Conclusion

Young-onset Dementia should not keep being acknowledged in words while left without clear planning, funding, and delivery.

If the Government wants credit for recognising YOD, then it needs to do more than say it is a priority group.

It needs to show the actions.
It needs to show the funding.
It needs to show the pathway.
It needs to show who is accountable.

Until then, these parliamentary answers do not provide reassurance.

Selected previous Substack articles on Young-onset Dementia

A Stuff story by Emma Ricketts today highlights exactly what I wrote about on Tuesday: unpaid family carers are missing out on this fuel relief because they are not in paid work, and their main benefit, along with any other allowances they may receive, will not cover a fuel shock of this size when travel is constant and unavoidable.

You can read the Stuff story here:
‘Fuel price increases ‘just not manageable at all’, mum hits out at ‘targeted’ $50 relief’

My heart goes out to her. Caring full time for a severely ill child is already relentless. To then be told, in effect, that because you are not in paid work you do not count for fuel help is cruel.

Equally, some of the appalling comments under the story, and the way this mother’s situation was picked apart, really got under my skin. Comments closed before I could respond, so this is my view on both the story itself and the ugly lack of empathy shown in some of those comments.

What ministers are saying does not hold up

What Christopher Luxon, Nicola Willis and Louise Upston are saying simply does not hold up in a case like this.

This mother is not out of paid work because she has made some bad choice, or because she is unwilling to work, as some comments insinuated. The Government itself recognises that her son’s needs are so high that she cannot be in paid employment. That is the whole point of Supported Living Payment as a carer.

So when ministers say this package is for those ‘doing it toughest’, or imply that beneficiaries do not face the same transport pressures as working families, they are not describing reality. They are drawing a political line around who counts.

This is not a mother choosing not to work. This is a mother doing work the state relies on, while refusing to recognise the real costs that come with it.

That is what makes the Government’s defence of this package so infuriating. It is dressed up as careful targeting, but it is really a narrow and ideological definition of need. If you are in paid work, you count. If you are doing unpaid care that saves the government money every single week, you are pushed outside the frame.

Some of the comments were appalling

And yes, some of the comments under the Stuff story were appalling. I can only agree with one of the last of the ninety plus comments before Stuff closed the thread less than an hour after the story appeared online: the lack of empathy was absolutely appalling.

Some people immediately jumped to the usual lines. She can claim travel costs. She will be getting Disability Allowance. She can get Temporary Additional Support. She already had a Givealittle. She should move house. She should buy an EV. She should catch the bus. She must be leaving something out.

That sort of commentary tells on itself.

There is a particular ugliness in the way some people respond to stories like this. Instead of starting with the obvious fact that this family is under immense pressure, they go hunting for reasons why she should not be believed, should not be helped, or should somehow be grateful for whatever scraps are already on offer.

No, existing support does not solve this

Travel assistance does not simply wipe out a fuel shock like this. Disability Allowance does not magically turn into a full petrol reimbursement. Temporary Additional Support is not some endless pot of money that makes everything fine. And a Givealittle is not a substitute for a fair income support system, let alone a reason to sneer at someone publicly.

That is the point some commentators either do not understand, or do not want to understand.

Existing support can already be stretched across all sorts of other costs. It may help at the margins. It does not remove the fact that a sudden jump in petrol prices hits hard when you are already driving hundreds of kilometres every week because your child has serious medical needs.

The comments about her Givealittle pages were especially mean spirited. Those appeals were not set up to cover ordinary petrol bills or day to day household costs. They were to help her and her son attend the Neurological and Physical Abilitation Centre (NAPA), with clinics in Sydney, Melbourne and Brisbane, for intensive three week paediatric therapy that is not available in New Zealand and is not publicly funded here. NAPA describes itself as a world-renowned paediatric therapy centre. The treatment itself costs many thousands of dollars before flights, accommodation, and support costs are added.

So when people sneer that she should just dip into Givealittle money for petrol, they are either not bothering to read what the fundraising was for, or they are choosing to misrepresent it. That matters because it shows how quickly some people move from scepticism to cruelty. Instead of asking why a family in this situation is under such pressure, they start hunting for reasons why she should not be believed or helped.

These are not optional trips, lifestyle trips, or poor personal choices. They are essential appointments for a severely ill child.

Without them, her son misses out on care, therapy, and rehabilitation he needs.

The ‘just move’ and ‘just buy an EV’ brigade

Then there were the glib solutions. Move closer. Live somewhere cheaper. Buy an electric car. Use the bus.

These are the kinds of suggestions people make when they have no idea what complex care, equipment, appointments, housing availability, rents, waiting lists, school arrangements, and day to day survival actually look like. They sound clever from behind a keyboard. In real life, they are often nonsense.

Moving house is not some easy reset button. It can mean higher rents, disruption to support networks, disruption to services, uncertainty around suitable housing, and new pressures on the whole family. Buying an electric car is not exactly realistic advice for someone already under severe financial strain. And as for public transport, the article itself makes clear why that was not a workable option.

This is what so much public commentary misses. People look at one line in a story and then build a fantasy version of what that family’s life must look like. They imagine easy alternatives that often do not exist.

The hypocrisy at the heart of this

There is also a deeper hypocrisy here.

Governments are very happy to rely on unpaid carers when it saves them money. They are very happy to let families carry extraordinary loads that would otherwise fall back on the health and social support system. But when those same families need urgent help with unavoidable costs, suddenly they are outside the frame.

That is why I do not buy the line that this package is properly targeted. It is targeted by political preference, not by lived reality.

If the Government wants to say it cannot help everyone, fine. That is a political choice and it should own it. But it should stop pretending that people like this mother are somehow outside the circle of real hardship, or that annual benefit adjustments and bits of fragmented support somehow settle the matter.

They do not.

What this story really shows

What this story shows is that unpaid carers are once again being treated as invisible. Their work is real. Their transport needs are real. Their financial pressure is real. And the idea that they can simply patch over a major fuel shock through existing support is, in many cases, nonsense.

This mother is not asking for luxury. She is trying to get her child to the care he needs.

That should be enough for any decent government, and any decent society, to understand.

I wrote more in my full Substack article from Tuesday about the Government’s fuel relief package, and why unpaid carers and many disability affected households are being excluded yet again:

Today’s announcement of an extra $50 a week for 143,000 families will sound like good news to a lot of people. And for those families, it probably is.

But there is another side to it.

If the Government is saying petrol prices are now so high that temporary fuel price relief is needed, then why has it chosen a form of help that leaves out many disabled people, disabled households, and unpaid carers who are also getting hammered by fuel costs?

That is the part that makes this unjust.

The Government says this is ‘targeted, timely, and temporary’ support. But it is only targeted if you accept the Government’s very narrow idea of who counts. This extra $50 is being paid through the in-work tax credit. That means it is aimed at working families with children who are in paid work and not on a main benefit. Nicola Willis’s own announcement says that plainly enough. It is for about 143,000 working families with children, with another 14,000 getting a partial amount, and it is meant to last for up to a year or until petrol drops below $3 a litre for four straight weeks.

If petrol prices are high enough to justify temporary fuel price relief, why is that help being designed to leave out so many disabled people, carers, and disability-affected households?

That would be bad enough on its own. But it is worse than that, because disabled people are already much less likely to be in paid work in the first place.

Whaikaha’s 2025 update says disabled people had a labour force participation rate of 26.8 percent, compared with 72.9 percent for non-disabled people. Their employment rate was 23.4 percent, compared with 69.3 percent. Their unemployment rate was 12.6 percent, compared with 4.9 percent. Those are not small gaps. They show a system that is already shutting many disabled people out of paid work. So when the Government ties help to paid work, it is not simply rewarding effort. It is locking in an existing inequality.

Disability and hardship already overlap

And then there is the poverty side of it.

MSD research found that in the year ended June 2023, children in households with a disabled person were three times more likely to be in material hardship than children in households without a disabled person. Those children made up 55.9 percent of all children in households experiencing material hardship, even though they were only 29.2 percent of all children.

That is not a small gap. It is a warning sign.

It tells you that disability and hardship are already overlapping in a big way. So if the Government is serious about helping households under pressure, it is very hard to justify a package that leaves so many of those households out.

This is not some tiny group on the margins either. Stats NZ says 851,000 people in New Zealand households were identified as disabled in 2023. That is 17 percent of the population, about one in six. So we are not talking about a niche issue here, even though some of those disabled people will be children, students, or retired rather than of working age. We are talking about a big chunk of the community right across the country.

This is also a rights issue

There is also a rights issue here. New Zealand signed the UN Convention on the Rights of Persons with Disabilities in March 2007 and ratified it in September 2008. The basic idea is simple enough. Disabled people should not be pushed to the side when governments design policy. But that is what this announcement risks doing. When support is tied mainly to paid work, many disabled people are more likely to miss out because the labour market is already less accessible to them. That sits very uneasily with a convention that is supposed to protect disabled people from exclusion and discrimination in public policy.

What the Coalition is doing here is sorting people into the worthy and the less worthy by its own rules. If you fit its picture of the ‘working family’, you count. If disability, dementia, illness, or unpaid caring has pushed you outside that picture, your hardship somehow matters less.

Transport costs are not optional

Then there is transport itself, which is where the Government’s logic really starts to fall apart.

Disabled people and their households often face costs that are not optional. Hospital trips are not optional. GP visits are not optional. Pharmacy runs are not optional. Care and support travel is not optional.

Many people cannot simply switch to buses or trains because public transport is patchy, inaccessible, stressful, or just does not work for their situation. NZTA research found many disabled people stay home a lot because transport is too hard, and that some prefer using a car because it is simply easier than trying to walk, bus, or train their way through an inaccessible system. It also found that lack of money can itself stop people using a car, bus, or other transport.

Young-onset Dementia households are in the blind spot too

This matters for people with Young-onset Dementia, their whānau, and their supporters as well. These are often working-age households already dealing with lost income, extra costs, and major disruption to family life. Dementia at a younger age can force one person out of paid work early, and it can also reduce the partner’s or supporter’s ability to stay in full-time work. Alzheimers NZ says around 6,700 people under 65 are living with dementia mate wareware in New Zealand in 2025, making up about 8 percent of all 83,000 people living with dementia mate wareware.

Fuel costs matter a lot in that world because travel is often essential, not optional. Getting to day respite, dementia activities, support groups, GP and hospital appointments, assessments, pharmacy trips, and even simple outings that help someone stay connected all costs money.

Most people with dementia mate wareware live at home in their communities, not in residential aged care. But even for those in residential aged care, transport costs often still fall on residents and families, because they are not covered by Health New Zealand’s contracts with facilities. People in aged care also still need social connection for their wellbeing, and family carers are often a major part of that.

When fuel prices rise, some families will cut back on outings, think twice about respite or activities, or simply go without.

A double standard on transport pressure

That is why this announcement feels so one-sided.

One group is being told fuel prices are painful enough to justify urgent government help. Another group, which often has just as much or more unavoidable transport need, is being told nothing at all.

Worse, this is happening while the same Government has already decided to cut the Total Mobility subsidy from 75 percent to 65 percent from 1 July 2026, and reduce fare caps by around 10 percent in each region. So on one hand ministers are saying fuel prices are such a problem that they must step in for selected working families. On the other hand, they are shifting more transport cost onto disabled and older users of Total Mobility. That is not a consistent principle. It is a political choice about whose costs matter.

Paid work has become the test of deservingness again

And yes, I know what ministers will say. They will say this is about ‘working families’. They will say they have to target support somehow. They will say people in paid work are under pressure too.

All of that is true as far as it goes.

But that is exactly the point. Paid work has become the test of deservingness again.

If you are in paid work and have children, the Government can see you.

If you are disabled and cannot work, or can only work a little, it is much easier to be treated as invisible.

If you are an unpaid family carer whose household is under strain because disability or illness has pushed work hours down or out altogether, the message is basically that your fuel bill or public transport costs does not count in the same way.

What a fairer response would have looked like

That is why this should be challenged.

Not because families with children should not get help. They should.

But because a government that claims to be helping with a fuel price shock should not design that help around one narrow model of household worth. It should be looking at need, unavoidable costs, and hardship. Instead, it has gone back to an old line in New Zealand politics, the idea that the worthy people are the ones in paid work, while everyone else can wait their turn.

That might be good politics for some voters. But it is not fair.

A fairer approach would have been simple enough. If the Government wanted to put an extra $50 a week into low and modest income households facing unavoidable fuel costs, it could have created an equivalent temporary payment for people excluded from the in-work tax credit. That could have included people on Supported Living Payment, Jobseeker Support because of a health condition or disability, Sole Parent Support, and low income carers. It could also have recognised households living with Young-onset Dementia, where paid work may already have been disrupted and where transport to respite, activities, and appointments is often essential.

It could have recognised that some households face transport costs that are not discretionary and cannot just be cut back because ministers like the phrase ‘working families’.

Instead, the Government chose the headline that suited it best.

Once again, the Coalition has shown us who it sees first, and who it is prepared to leave behind.

That is why this announcement should not pass without challenge.

What you can do

If this angers you, do not just scroll on.

Share this article. Disabled people, unpaid carers, and households living with Young-onset Dementia should not be left out of this conversation again.

Share

Talk about it with family, friends, workmates, and community groups. A lot of people will hear ‘targeted support’ and assume it sounds fair. They need to understand who has been excluded, and why.

Write or email your MP. Ask them one simple question: if petrol prices are high enough to justify fuel price help, why are disabled people, carers, and others with unavoidable fuel costs being left out? You could also tell them that your vote on 7 November may depend on their response.

Attend candidate meetings. Ask the question in public. Make candidates explain why disabled people, carers, and households living with Young-onset Dementia are being left out of so-called targeted help. Do not let them hide behind slogans.

Write to party leaders and ministers as well. Especially Christopher Luxon, Nicola Willis, Louise Upston, and any minister claiming this package is fair and well targeted.

Tell them this is not good enough. Tell them support should be based on need, unavoidable costs, and hardship, not on whether a household fits the Coalition’s narrow idea of the ‘working family’.

Raise the issue publicly. Post about it on social media. Bring it up in community pages. Write letters to the editor. Ask why some people’s hardship counts, while others are expected to just absorb the cost.

And if you know a household living with disability, chronic illness, unpaid caring, or Younger-onset Dementia or Older-onset Dementia, ask them what rising fuel costs are already making harder, and ask how you can help. That might mean offering to do a supermarket or pharmacy run if you are already going, helping with a pickup or drop-off, or taking one small job off their plate. It does not have to mean giving money. But start by asking what would actually be useful. Do not assume. The point is to respond to what they need, not just what you think they need.

I’m old enough to remember the fuel shortages and responses of the 1970s. Fifty years later, here we are again. We can look back on those years as history, but we should also recognise that they raise serious questions for us now, especially because today’s policy choices, technologies, and political conditions are different.

So here are some of the questions I would like to see us, as New Zealanders, discuss openly, honestly, and without all the political tribalism and ‘gotcha’ behaviour of the last two weeks.

First, a quick reminder of the history. The first major oil shock hit in late 1973 and 1974, after the Yom Kippur war triggered the Arab oil embargo and major global supply disruption. That led to shortages and controls in New Zealand, including locked petrol pumps and conservation measures.

A second major shock followed in 1979, when the Iranian Revolution disrupted oil supply and pushed prices sharply higher. In response, New Zealand introduced carless days from 30 July 1979 until May 1980, cut speed limits, and restricted petrol station trading hours, including weekend limits. That history matters because it shows how quickly a conflict far from our shores can flow through into everyday life here at home.

While I have my own views on many of the questions below, I do not pretend to be an expert in this field, nor am I fully across every argument for and against the possible responses we might consider. But I do think we need a much more open, transparent, and far-reaching examination of what the short, medium, and long-term response should be.

What exactly are Ministers being told about current fuel stock levels, likely resupply timeframes, and the degree of risk to households, freight, aviation, public services, and essential industries? How much of that information can be shared publicly now, without compromising genuine commercial or security sensitivities?

If the Government has already set up a ministerial group to oversee fuel security and supply chain risks, should it also commit to regular public briefings so that people are not left guessing about how serious the situation is, or what might happen next?

Should Parliament and opposition parties be brought more fully into the picture through structured briefings, even if executive decision-making remains with Ministers? In a situation like this, is public trust strengthened by broader political visibility, even where full cross-party control would not be practical?

If fuel supplies do become tight over the next few months, what would the Government’s priorities actually be? Which sectors would be protected first? Emergency services? Food freight? Public transport? Aviation? Rural supply chains? Something else? How would those decisions be made, and when would the public be told?

And beyond the immediate crisis, should this be the moment New Zealand finally asks a much bigger and long overdue question: why are we still so exposed to overseas fuel shocks in the first place?

If the Strait of Hormuz crisis turns out to be a warning shot rather than a short-lived disruption, should we now begin serious work towards making New Zealand as close as possible to 100 percent energy self-sufficient over time? What would that mean in practice? More renewable electricity? Greater electrification of transport and freight? Policies to accelerate electrification across whole industries and sectors? More solar, wind, and battery storage? Expanded local biofuels or synthetic fuels? Strategic fuel reserves? More resilient coastal shipping? Faster public transport investment? Stronger grid storage and distributed generation? Something else again?

What would a credible long-term plan for energy self-sufficiency actually look like, and why has it not already been treated as a national resilience priority?

If we can mobilise quickly in response to an international crisis, why can we not also mobilise around a long-term strategy that reduces our vulnerability before the next one arrives?

And perhaps the biggest question of all: will this become a real catalyst and inflection point, where the Government stops treating the present crisis as a short-term supply problem to be managed quietly while political rhetoric is amplified to protect each side’s tribal votes? Or will it instead be treated as the wake-up call it should be, prompting us to build a far more resilient, transparent, and self-reliant energy future for New Zealand?

Many people may feel pessimistic about some of the answers. But what would it take to make sure we do not simply let history repeat itself again in the 2030s, 2040s, or 2050s, just as it has now, fifty years after the first major oil shocks of the 1970s?

Please like, comment, share and subscribe. As always constructive comments are preferred. Also please note, this is not my normal Substack series which is mainly about Young-onset Dementia and Health Policy in Aotearoa New Zealand.

“Carers [in the strategy] are family, whānau, aiga, and individuals, who provide care for someone who needs additional assistance with their everyday living because of a disability, health condition, illness, or injury.” (MSD, 2026)

The consultation is open now. Submissions close on 12 March 2026. If you want to read the draft and make a submission, MSD has the information here:

Draft Carers’ Strategy Action Plan

I have submitted on the draft. I did it through a Young-onset Dementia advocate and whānau carer lens, because if a plan cannot work for working-age dementia households, it will not work properly for anyone who is carrying high-intensity caring in the community.

Before I get into my critique, it is worth summarising what the draft is trying to do, because otherwise it is easy to miss why the weaknesses matter.

What the draft Action Plan actually proposes

The draft is built around three broad priority areas: Recognition and Appreciation, Health and Wellbeing, and Financial Security. Under each area it sets out outcomes it wants to achieve and a set of “immediate deliverables” that are meant to be first steps.

Some of those immediate deliverables are practical on paper. Examples include:

• An annual national carers day as a recognition initiative.

• Work to make it easier to find information about supports, including navigation and clearer pathways.

• A focus on respite and breaks for carers, including promoting existing respite options and building a national picture of what respite services exist.

• Work on monitoring and data, including a framework of indicators and better government information about carers over time.

It also describes the plan as a rolling programme that can evolve, with priorities reviewed and updated. In theory, that could be useful.

In practice, it also creates a risk: it becomes easier to keep shifting the hard work into the future.

That is the core tension of the draft. It contains strong problem statements about carers’ reality. But much of the near-term activity reads like information work and internal government work. That matters if you are an informal carer who needs relief now.

The Carers’ Action Plan draft is honest about the problem

There are parts of the draft I respect. It tells the truth in places. It acknowledges what carers say. It recognises that systems are fragmented and that carers often do not receive early, targeted support pathways. It acknowledges that respite is experienced as ‘broken’, and that existing respite options can be geared toward aged care and not suitable for children or complex needs.

That honesty matters. But it is not enough.

A plan that mostly maps, promotes, and prepares for future frameworks is not relief. It is administration.

Why Young-onset Dementia exposes the plan’s weakest points

Young-onset Dementia (YOD) is not simply ‘dementia, but younger’. It is a life-stage shock.

It arrives while people are still working, still parenting, still trying to keep a household afloat on rent or mortgage payments, bills, and the usual cost of living. When it hits, families can face rapid income loss, rising supervision needs, and safety risk at home. Dependent children can become collateral carers, even when nobody uses that label.

In Aotearoa New Zealand, dementia is still treated mainly as a health condition. Yet for working-age households, especially YOD households, it often behaves like disability in daily life. Functional loss, participation barriers, long-duration support needs, and constant supervision. When the system treats YOD only as ‘health’, families can miss disability-like supports and the unpaid carer becomes the default provider of disability support work, unpaid, unrecognised, and often invisible in data.

If the draft Action Plan cannot meet this reality, then it has not yet earned the word ‘action’.

The draft is strongest where it tells the truth about respite

The clearest line in the draft is the one many carers already know in their bones: respite is broken.

When respite is unavailable, unsuitable, or too hard to access, carers do not just miss a break. They lose the ability to keep a job. They lose the ability to parent well. Their own health erodes. Household risk escalates. Families spiral. Crisis becomes predictable.

This is the point where the plan’s current approach fails. Many of the immediate deliverables lean toward outreach, promotion, and building a national picture of what exists. That may be useful information, but it does not fix brokenness. In a broken system, promotion can even make pressure worse by directing more carers into queues for services that cannot absorb demand.

There is a simple test I keep coming back to.

At 2am, when a carer is exhausted and the person they support is unsafe, mapping and promotion do not matter. What matters is whether safe, suitable respite exists and who is responsible for making access happen.

A plan that cannot answer that is not yet a plan for carers.

‘A portal is not a pathway’

Drafts like this often drift toward ‘navigation’. Better information. Better signposting. Better websites. Better stories about respite. Better awareness.

But a portal is not a pathway.

A pathway means a carer is identified early, a wellbeing check happens, and responsibility is clear. It means warm handover into supports that have real capacity. It means the burden does not fall back on the carer to ring ten places, repeat their story ten times, and then be told everything is full.

The draft itself acknowledges fragmented systems and a lack of targeted early pathways; yet excludes actions to create such a pathway.

That is not just a design flaw. It is a harm.

A rolling action plan is only credible if it becomes a delivery tool

The draft proposes a rolling plan, a ‘living’ plan. In theory, that can be good. It can avoid the common pattern of publishing a plan, waiting for it to expire, then writing a new one.

But a rolling plan can also become a rolling deferral mechanism. A way to keep pushing hard decisions down the road.

This is why the absence of firm dates, ownership, and resourcing signals matters so much. Without those, the plan risks becoming a paper tiger. A document that looks active while carers wait for change that never arrives, or arrives too late.

An action plan needs a minimum standard. For every deliverable, there should be:

• a lead agency and named partners

• a start point and target date, even if it is only quarter and year

• a clear statement of what changes for carers

• a measure of success that reflects real relief, not activity

If those elements are missing, it becomes too easy to claim progress through process.

The plan also has a transparency problem

The draft refers to consultation and draws on the long-standing 2008 Carers’ Strategy framework. That history is not the issue. The issue is transparency. There was

If consultation began earlier as indicated:

“Led by MSD, a new draft ‘rolling’ Action Plan has been developed in partnership with the Carers Alliance and an Advisory Group of organisations representing the needs of carers.” (MSD, 2026)

the themes from that early engagement should be published. Otherwise carers and advocates cannot see what was heard, what shaped the draft, and who was represented early enough to influence it. This was not done, although at the Dementia Mate Wareware hosted workshop I attended the MSD workshop leader did say Alzheimers NZ was consulted.

Unfortunately, Alzheimers NZ, while one of the largest dementia NGOs, is not the only dementia NGO, and certainly not an exclusive YOD NGO like the Younger-onset Dementia Aotearoa Trust or the Young Onset Dementia Collective. That isn’t saying anything about Alzheimers NZ but about the initial consultation to arrive at the draft.

This matters for YOD. Too often, YOD is treated as an edge case, when it is actually a stress test for whether the system can support high-intensity caring at all.

At minimum, MSD should publish a short summary of early engagement themes, who was engaged, and how feedback influenced the draft. Not later. Not after decisions are already baked in. Now, alongside the final plan.

Too much of this reads like an unfinished work programme

There is a deeper issue that many carers I’ve discussed the Action Plan with pick up quickly.

Some of the immediate deliverables read like internal work that should have been completed before the draft was published. Mapping. Stocktakes. Promotion. Framework building.

Those tasks may be necessary, but carers do not experience them as support. They experience them as more talk about a system that is not working.

An carers’ action plan should be centred on carers, not centred on agency work programmes. One practical fix would help immediately.

For every deliverable, include a ‘carer benefit statement’. One paragraph. Plain language. What changes for carers in the next 6 to 12 months.

If the answer is ‘we will have better information’, then it is not a deliverable that meets urgent need.

What would make the draft credible for YOD carers

If you want to know what a credible version looks like, it is not complicated. It is harder than writing a draft, but it is clear.

1) Name Young-onset Dementia explicitly

Not as a passing example under ‘complex conditions’. As a distinct life-stage cohort with distinct needs.

2) Make respite a 2026 delivery commitment

Not a map. Not outreach. A measurable increase in age-appropriate, dementia-capable respite capacity. Including emergency options.

Also define ‘age-appropriate’ once, in practical terms, so it cannot become a slogan. Under 65 suitable environments and activities. Dementia-capable staff. Supports that fit working-age households and dependent children. Options that recognise people may be physically fit but cognitively unsafe.

3) Build a diagnosis-to-support pathway with warm handover

Carer identification. A wellbeing check. Clear responsibility for follow-through. Real connections into services that have capacity.

4) Make stabilisation a real Financial Security deliverable

Financial security is not a brochure. It is whether a household stays stable.

YOD households need a stabilisation pathway that recognises long-duration income shock, housing risk, transport disruption when driving ends, and the cost of keeping children stable. If the plan cannot help prevent avoidable collapse, it has not delivered financial security.

5) Stop recycling pilots and scale what already works

In this space, Aotearoa already has services and providers doing effective work. The failure is capacity and capability to grow.

That means multi-year contracts, a workforce funding line, and replication funding so proven models can spread beyond one region. Not a new cycle of pilots that trap good practice in small pockets.

6) Make monitoring reflect real relief

Publish indicators that tell the truth: time from diagnosis to carer support contact, access to age-appropriate respite, waiting times by region, and crisis escalation markers. And link those indicators to corrective action, not just reporting.

7) Show alignment with dementia strategy and aged care work

A carers plan that does not clearly connect to the Dementia Mate Wareware Action Plan 2026 - 2031 (Which has been with Associate Minister for Health Casey Costello for ‘consideration’ for five months), aged care reform work (The latest being the Ministerial Advisory Group set up by Minister of Health Simeon Brown and Casey Costello in her Minister for Seniors capacity), health strategies and commissioning, and social supports is not a whole-of-system plan. It is a document in a silo.

My bottom line

The draft Carers’ Strategy Action Plan contains strong problem statements. It acknowledges broken respite and fragmented pathways. That matters. But its immediate deliverables do not yet match the urgency of its own diagnosis.

Calls to action

If you are an informal carer, or you support someone who is, please consider doing three things.

1. Read the draft and make a submission before 12 March 2026. Even a short submission matters. If you only write one paragraph, make it this: what would actually change for you in the next 6 to 12 months.

2. Ask for delivery, not slogans. In your submission, insist on at least one time-bound 2026 commitment that carers will feel, especially around respite capacity, emergency respite, and a real diagnosis-to-support pathway with warm handover.

3. Share this consultation with others. Forward it to your whānau, support networks, GP practice, community groups, and anyone who is quietly caring at home. Many carers do not call themselves carers. They still deserve to be heard.

4. If you work in the sector or government, there is a simple test worth applying before this becomes final: what changes for carers this year, in the places where the system is currently breaking them.

5. Keep an eye on what happens next and what gets published. MSD says it will publish a summary of engagement on its website, with responses anonymised, and that a list of submitters may be provided. It also says information from the consultation will be used to develop advice to Ministers and finalise the Rolling Action Plan.

   That means the public story of “what submitters said” may come later, and it may be condensed. Watch for the summary and compare it with what carers actually submitted.

6. Follow the decision point. MSD’s process is to finalise advice and provide it to Ministers, and the Action Plan’s future will ultimately depend on ministerial decisions. The relevant Minister is Louise Upston, who currently holds the Social Development and Employment portfolio.

   
   If you want change, do not stop at a submission. Once the summary is published, consider writing directly to the Minister and to your local MP, asking what changes will be funded and delivered in 2026, and what accountability will apply.

That omission matters, because what isn’t named tends not to be designed for. And what isn’t designed for becomes a gap families fall into.

Young-onset dementia is dementia diagnosed under 65. It hits people who are often still working, still raising children, still paying off rent or a mortgage, still trying to keep a household running. The consequences are different, because the life stage is different. It is a whole life interrupted. Yet most of our systems still treat dementia as an ‘aged care’ issue.

So on 7 December 2025, I drafted a letter to the Health Committee. I slept on it, then emailed the letter on 10 December, copying in Prime Minister Christopher Luxon, Leader of the Opposition Chris Hipkins, Minister of Health Simeon Brown, and Associate Minister of Health and delegated minister for Dementia Management, Casey Costello. My message was simple: from a young-onset dementia lens, the report largely overlooked the needs of working age people living with dementia and their whānau.

What I put on the record in my letter

In my letter, I pointed out that ‘people with younger-onset dementia’ barely appeared in their inquiry report, save a single mention in the context of the Dementia Mate Wareware Action Plan 2020 – 2025, and even where it did, there was no separate analysis of what under 65 households face, nor that the Action Plan was never fully funded or implemented.

This is not new. The need for age appropriate dementia care for people with Young-onset dementia, their whanau, and supporters has been raised for decades, both here and overseas.

I also tried to be practical. The core gaps are not complicated to describe, even if they are hard to solve.

• Age appropriate support at home

• Fair pathways for early diagnosis, navigation and key worker support, early medical retirement and income support

• Rehab and day programmes that make sense for people in their 40s, 50s, and early 60s

• Avoiding residential care placements that effectively isolate a younger person in a facility designed for frail people in their late 80s

That is the baseline. If we cannot name those needs clearly, we cannot build services that fit.

A couple of days later, I received a reply inviting me to brief the Committee in person.

The briefing, and why I centred the diagnosis gap

By the time I came to brief the Committee at the end of January 2026, I knew I had limited time. A short ten minute briefing cannot cover everything. I decided to focus on where the damage begins, because that is also where prevention is still possible.

The theme I kept returning to was the diagnosis gap.

If you want a simple version, it is this: people can spend years in a confusing limbo where something is clearly wrong, but the clinical diagnosis pathway does not always deliver clarity, or the right kind of specialist assessment, in time. Under 65, early changes are often misattributed to stress, depression, burnout, relationship breakdown, menopause, or midlife overload. That is not a moral failing by clinicians or families. It is a system pattern, and it has consequences.

New Zealand research backs up what families report. One NZ cohort study found the mean time from first symptoms to a young-onset dementia diagnosis was about 3.6 years. The same research points to predictable bottlenecks, including when early symptoms are treated as anxiety or depression and referral pathways slow down, and when people do not reach the right specialist pathway early.

That is why I told the Committee the diagnosis gap is not a mystery. It is a quality issue in our pathway design.

I also mentioned, briefly, that I have seen this pattern in my own household. There were early warning signs years before a formal diagnosis was made. At the time, they were framed as mental health, and dementia was not on the table. Much later, once we finally reached specialist assessment with clinicians who understood young-onset dementia, those earlier warning signs were described as missed red flags. I’ve told this story before, and I don’t want it to override everything else. I mention it here because it matches what the research describes: delays early on often compound later.

Figure 1, the one thing I asked them to look at

In my briefing pack, I included a single diagram that tries to make this compounding effect visible. In the room, I said: if you only look at one thing, look at Figure 1.

The point of the figure is straightforward. It shows how delays and system misfit affect four areas over time: health and diagnosis, whānau and supporters, work and income, and supports and care setting. You can read it left to right. The longer clarity and support are delayed, the more pressure shifts onto families, the more income and employment fall apart, and the more likely it is that people reach crisis without planning time.

That is why I pushed the Committee to treat young-onset dementia as unfinished business, not as a footnote in a report.

What I asked them to do next, and why it is reasonable

I tried to avoid turning the briefing into a long list of ‘wouldn’t it be nice if’. I framed it as a starting package, grounded in what’s already known and what’s already working in places.

I asked for three practical areas of action.

1. A national young-onset dementia diagnostic pathway with real implementation behind it

   Not just a document that sits on a shelf. A pathway with timeframes, clear referral expectations, and support for GP uptake, so the process does not depend on luck, postcode, or who you happen to see first.

2. A minimum ‘first 12 months after diagnosis’ offer

   This is where families need navigation, information, planning support, and practical help fast. Without it, people are forced to coordinate care and services while they are still trying to understand what the diagnosis means. I told the Committee that a key worker model, one person who can walk alongside the person living with dementia and their whānau over time should be considered a minimum, not a luxury.

3. Evaluate and replicate models that already work

   We do not need to pretend we are starting from scratch. The Committee itself has previously pointed to CARE Village as a model. I also asked whether a model like the BrainTree partnership approach in Christchurch, with diagnosis linked support and strong NGO involvement, is viable to assess and replicate in other main centres. This is the kind of practical work that moves beyond general statements and into service design.

If you want to view the recording of my briefing, it starts around the 14 minute 35 second point here: Health Committee 28 January 2026

I had a good reaction from the Committee, as you can see at the end of the recording, but didn’t have time for members’ questions as I had planned. Ten minutes goes so fast, especially if you are nervous like me, and despite many timed practice runs I still ran out of time, as I fluffed my rehearsed lines at times. However, one committee member saw me in a café some time afterwards and introduced themselves and asked me some questions. That was very kind of them and showed a level of engagement beyond what I expected.

Later I emailed a longer answer to their questions which they cc’d to the other committee members. I also see that last week the Health Committee met in private for 5 minutes about the Young/Early onset Dementia Briefing. So, Ill be tracking this with interest as to what may happen next.

Why I’m telling Substack readers this

Because young-onset dementia is still too easy to ignore. It doesn’t fit aged care stereotypes. It is not always visible in policy. And it is too often treated as a rare exception when it is a predictable group with predictable needs.

If we want change, we need to insist on visibility, fit, and follow through.

What I have learned since joining other Young-onset Dementia families and supporters is we have to take the initiative, and let decision makers like the Health Committee members know that 6,800 people with Young-onset Dementia, their whanau, and supporters are not invisible, but really do mater and have a voice. I’m just one voice and we need many more to come join us.

What you can do

1. Email your local MP and ask one clear question: ‘What is New Zealand doing to reduce the young-onset dementia diagnosis delay, and where is the national diagnostic pathway with timeframes and GP implementation support?’

2. Ask for a minimum national post-diagnosis offer: a key worker or navigator model in the first year after diagnosis, with support that spans health, disability, and income impacts.

3. Push for replication of what works: ask Health New Zealand and the Ministry of Health what they are doing to evaluate and scale proven models, including specialist-linked community support options.

4. Share this Substack article widely, or use my other Young-onset Dementia series articles to learn more about Young-onset Dementia. I’ve heard some MPs have received copies of some of my previous articles after other advocates contacted MPs directly.