Legislation must embed disabled peoples rights

Trust is not enough when history tells us otherwise

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

I’ve spend the week watching submissions on the Disability Support Services (DSS) Bill on the Social Services and Community (SSC) Select Committee. The strength, eloquence, and deep care of our community has been on full display. The submissions make for powerful and emotional viewing. Disabled people, parents, family carers alike have all shared the reality of their lives, and their concerns about what the DSS Bill will allow to happen in the future. Threaded through these presentations was the pain and harm endured the past two years as a result of the Ministry’s sudden decision to freeze and cut individual funding packages in March 2024.

The process was designed to exclude

Last year, the disability community were promised no more surprises. In her September 2025 Minister Louise Upston stated that, “It’s important that the changes can be communicated to people in the right way – no surprises.” Yet the introduction of the Disability Support Services Bill in May 2026 was indeed a surprise for the disability community. There was no consultation, no engagement, no attempt to talk with various groups about what a DSS Bill might look like or what it should include. There was zero attempt to talk with disabled people, not even a ‘charm offensive’ to actively communicate why this Bill is important or necessary.

Instead, the DSS Bill was suddenly dumped on us, and rushed through its first reading with limited explanation. I had to go hunting for information and associated statements. Only three weeks were allowed for submissions, and from there a scant 8 hours for oral submissions (this has since been extended to 11.5 hours). The speed has caused consternation. The lack of solid information is worrying. The subtext and double-speak of the Minister makes it worse.

The Select Committee is struggling to hear everyone, despite only allocating 5 minutes per submitter. On Thursday they split into two subcommittees, yet not everyone who asked will be heard (apparently there were over 3,000 written submissions, with most requesting to speak). Bickering between committee members broke out on Thursday, with Helen White noting that the Minister required a report by 13 August, meaning the committee could not sit for longer, and the Chair vehemently disagreeing say they could sit more days or longer into the night if they wanted. The implication from this is that the Chair does not want to hear from all who wish to speak on this Bill.

Nonetheless, the disability community has showed up

Despite the short timeframe, lack of care, and only a 5 minute allocation, many submitters have showed up in person. Some have travelled long distances in order to speak to the Select Committee in person. One family cleverly sought 5 minutes per family member, allowing them a solid 15 minutes to speak. (Yes, I am going to file that clever approach away for future reference!). Tania Pointon and Juliana Carvalho performed a provocative and thought provoking roleplay. Aine Kelly-Costello shared a spoken word poem. Maqymseahe Ninces used AAC in her powerful submission. Kapiti Disability Advisory Group and Disabled Older Persons also spoke well. Marilyn Waring’s submission is definitely worth a watch.

Over the past week, the disability community has generously shared their stories and realities with the Select Committee. They have given of their time, their energy, their expertise, and their lived experience. They have spend money and resource to attend in person. It is clear that the DSS Bill is incredibly important to disabled people. As it should be, as it seeks to entrench in law the basis for disability supports.

"Trust me" is not good enough

Disappointingly, the Minister’s response has been to handwave away concerns, ask us to ‘trust her’, and imply that we have all been misled. She released the following after the second day of oral submissions (full transcript provided at the end of this post):

Minister Upston says this Bill is “just foundations” and “doesn’t change anything”. But foundations matter. Foundations determine what gets built next. It is all very well to say that “nothing changes today”, but this does nothing to address the very valid concerns and worries of the disability community. Legislation is not just about what happens today; it is also about what it will allow to happen tomorrow. This DSS Bill sets the groundwork for a major shift in disability support, where families are broadly defined, responsible first, and with little regard given to disabled peoples rights.

The disability community is right to be concerned that key protections and entitlements are being left to future programmes and secondary legislation rather than being firmly protected in the Bill itself. The many oral submissions to the Select Committee make it clear that families are exhausted and at breaking point. Legislating that family provide care first is not listening to what families are asking for. Similarly, disabled people have been clear that they want choice and control over who provides care. Legislating that they are forced to rely on family first is not listening to what disabled people are asking for. When a Minister is clearly not listening already, it leaves little confidence that they will listen in the future.

Rather than meaningfully engage with concerns raised across the sector, the Minister simply asks us to trust her. But history tells us, with certainty, that we cannot blindly trust government figures. The findings of the Royal Commission of Inquiry into Abuse in State Care are clear - disabled people must have their rights and protections embedded in legislation. The final report, Whanaketia, stated that human rights obligations, including the UN Convention on the Rights of Persons with Disabilities (UNCRPD), must be embedded into New Zealand law and the law must guarantee disabled individuals the right to choose their care arrangements. The Commission also recommend a new legislative framework governing how disability support services (DSS) are monitored, regulated, and funded. Such legislation should mandate independent oversight and ensure that disability settings are subject to strict safety and abuse-prevention audits. The proposed DSS Bill does not uphold these recommendations, nor does it set the groundwork for abuse-free, neglect-free lives.

How can we trust a Minister that cannot produce DSS legislation that progresses the recommendations of the Royal Commission of Inquiry? How can we have trust in a system that has not consulted and talked with us about foundational legislation? How can disabled people have faith in a bill that does not provide what they have repeatedly asked for?

Disabled people and their families have spent decades fighting for disability supports based on rights, choice, control, and inclusion. Instead of providing what has been asked for, this Bill creates a framework more focussed on reducing risk to the Crown than on creating the types of systems that lead to good lives.

What can I do?

• Encourage the people you know - it’s been a tough time and encouragement is always welcome! If you found an oral submission

• Sign this Action Station petition created by Victoria Coleman. This goes to Parliament on July 2. There are over 15,000 signatures so far - please sign if you haven’t already! If in Wellington, you can attend the Petition Handover at Parliament on Thursday, 2 July 2026, 12:30pm-3:00pm at Parliament House, 1 Molesworth Street, Wellington

• Sign this NZ Parliament petition by Ricky Andrews to remove Community Services Card and disability supports from joint income testing. This is a great petition as it requests that the Supported Living Payment and Disability Allowance are no longer means tested on your partner’s income, something I fully support. TWO DAYS LEFT TO SIGN!

• Watch the oral submissions (links below) - and send encouragement to those showing up and speaking. It is nerve-wracking, especially when committee members are a bit combative, and takes a lot of energy and thought to prepare.

• Write to your local MP and to the Minister of Disability Issues (l.upston@ministers.govt.nz) and tell them your thoughts after watching the Select Committee and presenters.

• Attend public meetings (National and Luxon are advertising a lot of these across the motu) and ask MPs questions about disability rights, families, and any of the raft of decisions that have harmed our community (Total Mobility reductions, accessible housing reductions, emergency housing reductions, disability support underspend…)

• Share on social media. Share links to the Select Committee, share this substack and others on the DSS Bill, share the posts of others on social media who have posted their submissions and spoken about the DSS Bill. Boosting disabled voices on social media keeps this issue front of mind and keeps the pressure on government.

More links and information

You can find information on how to watch the livestream and submitters here:

• Watch public meetings of the Social Services and Community Committee - New Zealand Parliament

• Submitters List - New Zealand Parliament

The last day for submissions to the Select Committee is Tuesday 30 June. There will be 2 subcommittees hearing oral submissions from 3:45pm to 7:30pm. A large number of these are organisations that had previously been denied a speaking slot - thanks for sustained pressure, and the advocacy of opposition MPs a second subcommittee was hastily arranged, with speaking slots sent out late Friday afternoon.

Previous on the DSS Bill

The Devil Is in the Details: Unpacking the Government’s DSS Bill Narratives

Submission Sunday - Disability Services Bill

National sets up means testing for disability support

Why Disabled People Need to make a Submission on the Disability Support Services Bill and a template attached

Transcript from Minister Upston’s video:

Yes, so the first thing is that I think is a really important background is the $2.9 billion that we are investing in supporting disabled people. There's no legislation that authorises that, so there's no underpinning legislation that says what is the disability sport services for? Who is it for, how does it work? And one of the pieces of information that has been very, very clear in all of the disabled people that I've met, their families, carers, organisations over the last couple of years, is they want things to be fair, clear, consistent, certain and transparent.

So it's pretty hard to do that if you don't have legislation that provides the foundations. So what we wanted to do as part of the stabilisation phase is put the building blocks in place, or the foundations of the DSS legislation. It doesn't change anything, but it's really important foundations and that's pretty much what the bill is about. So it is absolutely needed for that very reason.

So as I've been in the role, one of the biggest frustrations has been, you know, it's unfair, why do some people get more support than others? It was really kind of a postcode lottery in terms of where you live, determine what support you might access. So we've done a lot of improvements already. If you think about the needs assessment is now consistent, no matter where you are in the country. So you might have a different NASC provider, but the needs assessment process is exactly the same, which is really important in terms of fairness. And then part of what we wanted to do was then make sure there was transparency around how the system works.

So this bill is only step one. And then what we need to do is put more detail around it, which is what we've called the ministerial programmes. I accept that that name has kind of got a few people alarmed. It's actually a support programme and all it does is, and we will have the whole DSS system documented in these programmes over the next three years.

So any disabled person, their family, their carers, their support people can actually read clear, transparent information about what DSS is, how it can be provided. And so we are responding to the very clear demand for us around clarity, certainty and consistency.

Yeah, so it doesn't actually change anything for any disabled person today. It doesn't change it. So eligibility doesn't change. It doesn't change what they're entitled to access through their support package. So they will have had a needs assessment, they will have a support package. None of that changes, none of it. It doesn't change anything for their carers either.

So there's been some wildly inaccurate information out there about what this bill does, but I want to reassure you that it doesn't change anything in terms of what someone is currently getting, what their carer is getting. It doesn't change any eligibility or any support that they are getting today. It is actually the opposite. This is all about how we strengthen DSS and make it much, much better for the future.

Yeah, so I want to be really clear. There is no means test that is introduced with this legislation, and that will not change. Where the question has come up is there is a very small couple of areas that currently have means testing. One is around modifications to somebody's home. That will remain. But there is no intention whatsoever to introduce means testing for any disabled person or their family. And I want to be very clear about that.

Yeah, so when we talk about secondary legislation, I referred to it earlier as... They've been called ministerial programmes in the legislation. We're going to change that because it makes it sound different to what it is.

If you look at the welfare system, there are welfare programmes that just lay out what the programme is and provides detail. That detail is in secondary legislation. What does that mean? It means that there is to be any change. There's quite a significant process. It would have to be gazetted. It would have to go through cabinet. It can't be changed at the whim of a chief executive or an individual minister. And I'm going to say that again. So having all of the support over the next three years documented and recorded in support programmes will mean that they cannot be changed easily. They can't be changed like the changes occurred in March two years ago. And I know that's what people are concerned about. We are making the system stronger and more consistent so those sorts of things can't happen.

I've also heard the concerns about people wanting to be consulted in the development of these programmes. And I have said, while I'm the Minister of Disabilities, I will ensure that happens. Well, I want to be very clear about the fact that over the last two years, there's been an enormous amount of consultation around what hasn't been working with DSS. That's where the system was in an absolute mess and we needed to fix it. So I accept that the stabilising period was challenging. But myself, Whaikaha at the time, the team from DSS have significantly engaged and listened to what the community wanted. What they want is clear, consistent, transparent and certain disability support. That's what we're doing. And the bill is just step one. When we build the support programmes over the next three years, that will then document so that everybody can see, transparently, what the support packages are.

So, for example, there might be a support programme around flexible funding. And so what we've already agreed that we announced last September, flexible funding based on a plan and then no rules, no guidelines after that. That will form part of a support programme that then is consulted, that then is documented in secondary legislation. So it is protected. It is protected and it can't be changed. So we have listened and we have heard what is important and that's why this bill has been introduced because that's a critical first step in strengthening and improving the disability support service.

Yeah, so that is a smaller part of the bill. So we were doing this work to strengthen anyway. What it is basically clarifying is the intention that through the disability support service, it was never intended that MSD would be an employer of family carers. Now, do we have to improve the way the family carer system works? Absolutely. Which is why we have already started consultation around a carer support package. I've listened and I've heard, you know, carers feel undervalued, underpaid, and it's unsustainable. I know how incredibly stressful it is for some parents with older disabled children who are worried about who will care for them when they can't. So the carer support package is really tackling some of those issues that I know people worry about from a financial perspective, from a respite perspective.

There might be other forms of support that carers need. And really, really importantly, what those transitions might look like for their disabled family member. So that consultation is under way at the moment and we want to get that sorted before the end of the year. So I would really, really want to encourage disabled people and carers and families to get involved in that process so that we can create a carers package that is sustainable and works in the long term.

And I would remind people that the announcement we made in September last year, for the very first time ever, carers are being considered in the needs assessment. Is it perfect yet? No, but we are making progress and it is really important that people engage in this consultation around the carer support package so it is better than it is today. That this bill doesn't change anything for anyone today. What it does do is set up for a much, much stronger, better disability support service in the future. It is just the foundations of what we are doing to strengthen the support for those who are disabled and their families and carers.