Breaking: the Government is attacking disabled people and their carers. Again.
Late last night, the coalition government snuck through another bill attacking disabled adults, children, and their families. The bill, introduced without consultation or warning, paves the way for income testing and asset testing for disabled adults and children.
It also narrows the ability of families to get support for their disabled children and for disabled adults to have funding support to live.
Feel free to skip to the comments if you read this already in your email!
I wanted to get the news about this bill out quickly for a few reasons. The main reason is that these actions are carried out in near-secrecy, usually at night or early evening, to bypass responses and analysis from both parents and media.
This impacts those of us who care for disabled children because we don't have time to read legislation late into the night when we are preparing for a night of wake-ups for medication or meltdowns.
The lack of response then signals to the media that this issue doesn't matter. And they don't cover it either. Then the government succeeds in pushing through harmful legislation that destroys lives.
This coalition government is all about 'flooding the zone.' Winston Peters and David Seymour are experts at this political strategy. The strategy comes from Donald Trump's former chief political strategist Steve Bannon, who said: "The Democrats don't matter... The real opposition is the media. And the way to deal with them is to flood the zone with shit".
So, it's up to us, as people who care about each other, to provide that analysis and speak out.
That's what I'm urgently trying to do here with the help of other disability advocates. Please keep in mind, many of us read this bill late into the night, in my case with my child asleep beside me as I got up twice to medical alarms for my other child. We are tired. And we are doing our best.
I'm sending all of my love to those who are scared and distressed by this message. Please, please call your GP if you're in distress. If you're at immediate risk of harming yourself, please contact your local Crisis team or call 111. For free, confidential 24/7 support, please text or chat at 1737 anytime.
Arohanui, Emily
The most important question you will probably have is: What can we do? And the awful answer is: right now? This probably can't be stopped.
The Coalition is deliberately making laws in ways that avoid feedback and pushback. They will probably continue to push this bill through under urgency. And we have seen that, even when feedback - like Select Committee submissions - is available, the Coalition simply ignores it.
This should make you furious. And if it does, there IS something you can do.
You can tell five friends who aren't political how this affects you. How this affects your friends.
Do this now. Literally get on the phone or on Messenger or WhatsApp or text messages and tell five people what is happening. Send them this! Share your story! You know five people who have a disabled person or a carer of a disabled person in their lives. Everyone does! Disability isn't uncommon!
I'm literally begging you to share this article!
And tell them: the only way - the actual only way - to stop this horrible shit from destroying the lives of disabled people and those who care for them again and again and again is to get them to enrol to vote and to get rid of this hideous government in November.
Please do this right away, because the only way we can get rid of this government is to talk to each other and to make everyone realise that we, the people, are the ones with the power - the power to get rid of this government and to elect a better one in its place.
I will continue to update this piece as more reactions from disability advocates come through. Please refresh the page before reading (that’s F5 baby!).
First up - The Labour Party and The Greens have told me they oppose the bill.
Priyanca Radhakrishnan, Labour's Minister for Disability Issues, didn't muck around with her words, and damn, I appreciate that from a politician! Radhakrishnan has been flat out since last night speaking to disabled people and carers.
"The Government is abdicating from its responsibility to support disabled people and family carers," she told me this morning.
"I know for many disabled people and carers it brings back the cruelty of the government's March 18th cuts that removed flexibility from Disability Support Services funding. The bill sneakily allows for means testing but doesn’t define it – people who live at home with a working parent might not be able to get support and that decision can be made by the Minister not Parliament."
"This Bill is the death knell for a move towards embedding Enabling Good Lives principles in DSS funding. It moves away from greater independence, more choice and control for disabled people over the supports and services they access."
"The government has the numbers to push this Bill through to select committee despite Labour's opposition. At that stage we will interrogate all details thoroughly."
Koha means I can continue this mahi.
Green Party spokesperson for Children, Disability, Women, Royal Commission Inquiry into Abuse in Care Kahurangi Carter has also had a late night speaking to disabled people and carers. The Green Party clearly does not support such a cruel bill that heaps on more pain to an already hurting community.
"The Green Party has and will continue to fight alongside our disabled communities so everyone in Aotearoa can live with dignity," Carter says.
"It’s a pretty low bar to have to plead again and again to live with dignity. Luxon’s government has money to line the pockets of super wealthy companies while not even hiding their cruel decisions that make it harder for disabled people to access the things we need to live a good life."
"It's really sad, and it's a political choice. Disabled people and our whānanu deserve a leader who ensures we can access our communities and live with dignity".
So what is wrong with this bill?
First up, I called my friend Dr Rebekah Graham, who is an amazing disability advocate, to see what she thought. I knew she would have spent all last night awake too. Rebekah works in the disability sector for a parent-led organisation (Parents of Vision Impaired), writes her own newsletter via Substack, and advocates across a range of social issues.
Emily Writes: Hey Rebekah, this sucks. Thanks for talking about this with me. My immediate reaction is that this is setting up families and disabled adults for income testing and asset testing. This feels so egregious given children in disabled households are 4.5 times as likely to be experiencing severe material hardship compared with children in non-disabled households.
An IHC report published last year showed New Zealanders with an intellectual disability are twice as likely to live in hardship or severe hardship compared to the rest of the population.
Dr Rebekah Graham: Yes, that is definitely in there, but in a very sneaky sort of way. Disability support in Aotearoa New Zealand has never been means-tested. Access to funded disability support has historically been determined by need (i.e. the nature and severity of a person's disability), not their financial position.
For comparison - ACC is not means-tested. Public hospital care is not means-tested. Public school education is not means-tested. Introducing means-testing for Disability Support Services (DSS) would make it unique in terms of our major public services, and would do so by secondary legislation, not by Act of Parliament.
What this legislation does is set up the foundation to allow the Minister, at a later date, to implement means testing for disabled people and families. It’s kind of buried, but from what I can tell so far,
Clause 11(3) of the Bill sets out the criteria that ministerial programmes may use to determine eligibility and allocate funding. That list explicitly includes:
(f) income-based criteria; and (g) asset-based criteria.
This Clause creates, for the first time in Aotearoa New Zealand, an explicit statutory authority for the government to be able to introduce income and asset testing for disabled people seeking disability support services.
The "families first" principle in Clause 8 amplifies this. Clause 8(b) already requires that before DSS is provided, an eligible person should "use their resources." This is a little vague but when you combine Clause 8 (use your own resources first) with Clause 11(3)(f)-(g) (programmes can set income and asset thresholds) you have the foundational framework for means-testing. A disabled person with modest savings or a working partner could be denied support or only allocated a reduced amount of support.
With this Bill, the Minister could introduce a ministerial programme made by written notice, without a Parliamentary vote or going through a Select Committee process.This is called secondary legislation - and that is exactly what this Bill sets up for the Minister. It gives the Minister the ability to implement means-testing for a wide range of disability supports and services, simply by making a written notice.
Dr Bex
Emily: This is a response to Peter Humphreys and Christine Fleming's court case. For anyone who doesn’t know, they both fought all the way to the Supreme Court and won in December. They’re two really brave parents who care full-time for their disabled adult children, and they applied for recognition as employees of the government - because they are - and so yeah, the government wanted to shut them down because they won in the Supreme Court.
Dr Graham: It’s not just that court case (which won, and is significant) - there are more cases coming down the line, as family carers who have been providing care 24/7 seek compensation for their unpaid labour. The government is seeking to minimise the fiscal risk to themselves here.
As well as cancelling all the existing claims in progress, this Bill prevents any further employment related claims.
It also does something quite underhand, in that it also limits what family carers can be paid. The Minimum Wage limitation deems that carers who are working unfunded hours are deemed to not be working. Schedule 1, Clause 5 effectively states that any hours a family carer provides in excess of their funded allocation are deemed not to be "work" for the purposes of the Minimum Wage Act 1983.
In plain terms: a family carer providing care beyond their funded hours has no legal entitlement to minimum wage for those additional hours.
The Bill will remove MSD's obligations to ensure carers take breaks under the Employment Relations Act, receive leave under the Holidays Act, work in safe conditions under the Health and Safety at Work Act, and receive parental leave entitlements. These are presented as administrative burdens being lifted from MSD. But, in reality, they are just being shifted onto family carers to have to manage instead.
Essentially, this Bill is loading up families to provide unpaid care, stripping back their employment rights, creating conditions for unpaid family care, and removing any responsibility by the Crown to unpaid family carers.
Emily: So, in the first instance I think this is about shutting down families with profoundly disabled children who are full-time carers to their children. Then I think it’s about income and asset testing. And saying - find the money from anywhere, but we’re not going to help.
I feel like this is setting it up to when you go to your needs assessment for your disabled child you’re going to have to prove you went to your family, your child’s school or kindy, your church, your iwi, your friends, you ran a givelittle and all that - and you’re going to have to prove you did all of that to get your tiny bit of support.
Dr Graham: Absolutely. It’s setting up a system where a disabled person has to bring in a formal signed letter stating that they have no family support, just to access basic disability support.
It’s also enabling abuse. There is a very rosy picture being painted of families here - despite our country having appalling domestic violence and abuse statistics. If you’re a disabled adult and your abusive partner won’t provide support - but earns a solid income, what happens there? If you have a disabled child, but your partner engages in coercive control, and refuses to allow access to financial records - what happens there?
There’s a significant failure to understand the realities on the ground for families, and even less understanding of what works for disabled people themselves.
Emily: It all feels so insulting to families because they’re once again pushing the idea that we don’t consider ourselves to be the primary supporters of their families. As if we’re not all desperately trying to help our children without any support. The line in the Government’s spin on this is that “the Bill makes it clearer what DSS provides and how it fits with other supports. It confirms family and whānau remain an important source of support, alongside publicly funded services.” And then it goes on to say in the bill that responsibility lies with families and the communities, as if that’s not already the reality?
Setting up Give-A-Little’s for support for children with disabilities and for fundraising for wheelchairs and mobility scooters is already commonplace. Nobody expects their tiny amount of government funding to cover anything more than the bare minimum. And now, once again, they’re threatening to take away that bare minimum because carers are what? Greedy?
Dr Graham: Speaking of minimum, the Bill sets no minimum level of support. This means that there is no minimum level of support that cannot be withdrawn on means-testing grounds, and no requirement that means-testing criteria be reasonable or proportionate. Basically, they can deny DSS at any level they decide.
This isn’t discussed openly in the documents provided. The documents discuss ensuring expenditure is "managed within appropriated funding”, but they never explicitly come out with "we are creating the power to means-test DSS” - even though that is exactly what it does.
If you’re a parent that has worked hard to provide a home-for-life, so your young person doesn’t have to be vulnerable to the whims of the rental market, or because there is insufficient accessible housing available, that house is now an asset - and this Bill sets up a framework to then deny support to that disabled person.
Emily: “The Crown does not have unlimited funding and must make choices” is almost funny to me. Because they’re clear that tobacco companies and landlords and motorways are priorities over disabled adults, children and their families.
Dr Graham: They are definitely making a choice. And that choice is to make the lives of disabled people harder. Speaking of landlords, the Minister for Housing decided to cancel all the requirements for state housing to be accessible.
Disabled people are going to have to go and ask their family for support first, and only then, if they can’t, will the state provide support. It’s so dehumanising for disabled people.
Emily: Not that it matters to this government, but this is again a breach of the Convention on the Rights of Persons with Disabilities.
It even says that in the Regulatory Impact Statement: “44. Due to the sensitivity of proposals, there will be no community consultation prior to the DSS Bill being introduced to the House of Representatives. This may not be well received by disabled people, whanau, and carers. It may be seen as inconsistent with the obligation in the Convention on the Rights of Persons with Disabilities to actively involve and closely consult with representative organisations of disabled people on matters that directly affect them.”
Dr Graham: No external consultation, and a shortened Select Committee process. So an extremely limited time to read the Bill and respond. This makes it harder to be able to both fully understand what the Bill means, and harder to craft a solid response.
I don’t know if you’ve noticed, but at a lot of Select Committees now, the National and ACT MPs are quite brutal to submitters. It is hard to write a meaningful, nuanced, and sharp analysis when under time pressures and limited capacity!
Please share this so we can get the word out
Emily Writes
Lisa McEvoy, disabled parent of a disabled adult and Steward of Everyday Good Lives has another angle to all of this many of us wouldn't have thought of:
The new Disability Support Services Bill is not just a disability issue. It’s an ageing New Zealand issue.
Thousands of older parents are still caring for disabled adult sons and daughters well into their 60s, 70s and 80s. Many are already exhausted, financially stretched, and terrified about what happens when they are gone.
This Bill repeatedly talks about “family responsibility” and support as a “contribution.” That raises real fears that more responsibility could quietly be pushed back onto ageing families instead of building sustainable long-term support around disabled adults as equal citizens.
Many older carers are already struggling to survive on NZ Superannuation alone. We cannot realistically absorb the growing cost of support workers, coordination, transport, and disability-related expenses out of retirement income that is already stretched by housing, food, power, and healthcare costs.
Disabled adults do not stop being citizens because they need support.
Families matter deeply — but love should not become substitute welfare infrastructure because the state is under pressure.
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Daria Williamson gave a really great quick analysis of the Bill. (Remember: All of this is a quick analysis because the government gave no warning!)
I'm fascinated by this statement in the explanatory note: "The Crown does not have unlimited funding and must make choices."
Tax breaks to landlords and supporting tobacco companies and dismantling or limiting the provision of robust, dignified, and fair support for disabled people certainly are choices.
From what I understand based on a very rapid scan of the Bill, the essential message is this: If you or someone you're related to is or becomes disabled, that's a you/them problem. The Government won't do anything until every other avenue of support has been exhausted. And even then, you'll get crumbs, because the Government has prioritised other things and wants to pretend that Aotearoa is not a sovereign currency-issuing nation that has complete autonomy over the levels of Government spending.
It's also interesting that the department disclosure statement contains these mind-boggling answers:
S2.5. "For the policy to be given effect by this Bill, is there analysis available on:
(a) the size of the potential costs and benefits? - NO
(b) the potential for any group of persons to suffer a substantial unavoidable loss of income or wealth? - NO"
So they haven't even bothered to check what the potential costs and benefits are, or if a group could suffer substantial and unavoidable loss of income or wealth? Surely it's not appropriate to introduce a Bill when these basic issues haven't been analysed?
S3.1 points out that there was limited consultation with affected parties, and pretends that the select committee process will mitigate this.
Utter nonsense - we've seen this playbook with multiple Bills before, and the intention is clearly to limit the amount of opposition and accountability that they encounter for poorly drafted and highly biased legislation.
Here's an open letter too.
We know the Government will almost certainly ignore letters like this, so I hope we can concentrate our energy on getting people out for the election campaign, but I am including this great letter from Lisa as it contains important points - Emily.
I am writing with deep concern about the Disability Support Services Bill currently before Parliament.
I ask you to please read this not simply as a policy issue, but as a question about the citizenship rights of disabled New Zealanders.
Disabled adults do not stop being citizens because they require support.
They do not lose their rights to autonomy, privacy, contribution, relationships, family life, ordinary living, decision-making, or community participation because they need assistance in daily life. Support should enable citizenship — not replace it.
That principle sits at the heart of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which New Zealand has committed to uphold.
I am deeply concerned that aspects of this Bill risk moving us backwards.
The framing of Disability Support Services funding as merely “a contribution” toward everyday life weakens the understanding of support as part of the infrastructure that allows disabled people to live as equal citizens. Rights become vulnerable when support is treated primarily as a discretionary contribution rather than as part of New Zealand’s obligation to ensure equal participation and community inclusion.
I am equally concerned by wording suggesting that families and whānau hold responsibility “in the first instance and where appropriate.”
Families matter deeply. Many families willingly provide extraordinary love, advocacy, continuity, and support over decades. But disabled adults are not children simply because they require assistance. Their support needs cannot quietly become an assumed lifelong obligation placed onto ageing parents, siblings, or relatives because systems are under pressure.
There is an important legal and moral distinction between:
- families choosing to support someone they love, and
- the state structurally relying on families to carry responsibilities that properly belong within public disability support systems.
This distinction matters under:
- the UNCRPD, especially Articles 12 and 19
- the Human Rights Act 1993
- the New Zealand Bill of Rights Act 1990
- the Health and Disability Commissioner Code of Rights
- the Privacy Act 2020
- and fundamental principles of natural justice.
I am also concerned about the process surrounding this Bill.
Many disabled people and families are struggling to meaningfully understand, analyse, or respond to legislation that may fundamentally shape their lives for decades. Accessible consultation must be real, not symbolic. Disabled people should not have to fight simply to participate in decisions about laws governing their own lives.
I am also hearing growing fear within the disability community that this legislation could create a future pathway toward means testing, tighter financial eligibility thresholds, or increased assumptions about family financial responsibility.
Whether or not this is currently intended, the language around “contribution,” “sustainability,” and family responsibility is causing significant anxiety for many disabled people and families. Disability support is not simply an optional welfare payment. For many people it is the practical infrastructure that enables communication, safety, mobility, participation, relationships, and ordinary community life.
Families should not be discouraged from building stability, saving for the future, creating governance structures, or preparing sustainable support arrangements because they fear this may later reduce access to necessary disability supports.
If means testing or family financial assumptions are not intended, then clear protections and limitations should be explicitly stated within the legislation to reassure the disability community and protect long-term trust.
This Bill must not unintentionally create a future where:
- citizenship becomes conditional on system approval,
- ordinary life is constrained by administrative control,
- family love becomes substitute welfare infrastructure,
- or disabled people are increasingly managed rather than supported to live self-directed lives.
I ask you to advocate for:
- genuine accessible consultation and adequate time for public engagement
- strong embedding of UNCRPD principles within the legislation
- explicit protection of disabled adults as equal citizens with full legal personhood
- safeguards against shifting state responsibility onto families
- robust review, appeal, and natural justice protections
- privacy protections against excessive surveillance and information gathering
- clear protections against future means testing or indirect financial discrimination
- legislation that strengthens autonomy, inclusion, dignity, and community life rather than narrowing them.
This Bill will shape not only funding systems, but the kind of country New Zealand chooses to be.
Please help ensure we do not unintentionally legislate a future where disabled people are treated as managed recipients rather than equal citizens.
Two months ago, mum, carer, and disability campaigner Katy Thomas told RNZ that she expected retribution from the government after they brought back flexibility funding. So she's not surprised at all by this.
"This government is appallingly predictable. Louise Upston’s bill simply reveals how low they are willing to go to position themselves as the enemy of disability and gender equity."
"For years, advocates have campaigned for accessibility legislation in NZ to finally start meeting our UNCPD obligations. Conversely, this government opted to swing the opposite direction and claw back any pretence of protecting disabled people and caregiving whānau."
"After a term defined by a landslide of terrible legislature, who can be shocked they could shirk their court ordered duty of care?"
"When a government tells you who they are, believe them."
"For the entirety of their term, they disabled disability funding to our most vulnerable children and scrapped pay equity to the support workers and nurses who look after them. With a nice bit of marketing spin to reframe essential labour as “contribution” this government has chosen to double down on punishing disabled communities instead of actually supporting families in crisis."
"While kiwis leave in droves for better prospects across the ditch, this Government is picking fights with disability whānau instead of fixing the cost-of-living crisis they promised to solve."
"This bill is distraction dressed up as regulation. Narrowing supports and calling it clarity is a really tacky tactic to make disability whānau absorb the cost of governmental failures. Inciting struggling families to fight for scraps is a really cheap way to avoid responsibility on child poverty, housing, fuel prices, unemployment, inflation…"
Update: More people are publishing about this blatant attack on disabled people and their carers. Here is some background information and some of the good takes:
Huhana Hickey
Nick Ruane
Huhana Hickey