It's time to be loud
Plus: A declaration of disabled rights in Aotearoa is coming š£
Kia ora e hoa mÄ,
In this weekās delicious edition:
We WILL make a fuss about the Govtās new Disability Support Services Bill š
Does AI deserve the bad wrap it gets in the arts? š¤
Department of Internal Affairs backtracks on Lottery Grant criteria šØ
On Monday, the Government introduced the Disability Support Services Bill, which claims to āprovide clarity and stability to the system which supports thousands of disabled New Zealanders.ā CCS Disability Actionās piece on the Bill explains its potential impacts and why many disabled people, whÄnau hauÄ, and advocates are outraged.
This bill is attempting to sidestep a 2025 landmark Supreme Court decision which ruled that the family members caring for disabled people are considered government employees and should therefore receive the same benefits and protections.
Worryingly, this bill was introduced with no consultation and could also mean disability support funding becomes income tested. Disability Rights Commissioner Prudence Walker is very concerned about the Bill and says legislating to overrule Supreme Court decisions is not a just way for government to work. She added:
āThe billās aim to define disability support as a ācontributionā from the Government is likely to worsen the lives of families already struggling with financial hardshipā¦ There is clear evidence showing disabled families are more likely to face poverty."
In its first reading yesterday, the Bill passed with 67 ayes to 55 noes and itās now before the Select Committee. Notably, several parliamentarians in defence of the Bill labelled the anger and concern around it as āscaremongeringā.
Emily Writes said in her fantastic blog the risk of a bill like this is that it stays silent:
This impacts those of us who care for disabled children because we donāt have time to read legislation late into the night when we are preparing for a night of wake-ups for medication or meltdownsā¦ The lack of response then signals to the media that this issue doesnāt matter. And they donāt cover it either. Then the government succeeds in pushing through harmful legislation that destroys lives.
She says while āthe Coalition is deliberately making laws in ways that avoid feedback and pushbackā, we can still tell anyone and everyone about why this legislation is harmful, and more importantly, encourage them to vote.
ā With this bill, the tightening of the Total Mobility Scheme, and the mainstreaming of Lotteries Grants, itās fair to say weāre at greater risk of harm while the Government reorganises its coffers. Thatās why weāre hosting two letter-writing sessions to bring us together in sharing our concerns to MPs and anyone who will listen.
š« Weāll provide letter templates and D*List kaimahi will be available for anyone who needs help writing or filming their response. And of course, weāll provide hot drinks to keep you going! You can join in-person on Thursday 28 May at 11am-1pm at The D*List Community Hub (322 New North Road, Kingsland), or online on Wednesday 27 May at 6-7pm. RSVP with this form, so that we know what we need to support you.
š§ With no aged-care or dementia facilities in Wairoa, kaumÄtua with mate wareware are slipping through the cracks without support. In 2023, Cyclone Gabrielle forced the townās only rest home to close, and it remains closed today. The Hui interviews carers and community leaders about local programmes, such as PÅ«teketeke, and other grassroots kaupapa to support kaumÄtua living in remote areas.
š Lawyer Keegan Jones has designed a rental home listing website called Find My Nest that seeks to make accessible housing easier to find. Te Ao MÄori News reports that the platform will prompt landlords to enter information about the propertyās accessibility features and give people the option to search by accessibility features. Jones has big dreams for the platform and hopes that it can compete with the likes of Trade Me one day:
āWe are also looking at things like proximity to public transport and support services, because accessibility is not just about the four walls, itās about whether someone can actually live their life from that address.ā
šŖ§ RNZ reports a petition with 13,000 signatures was presented to Parliament on Wednesday, calling for a 5-year-old to be allowed to stay in New Zealand with his family after an autism diagnosis.
š§ The final episode of season 3 of the podcast, No Such Thing as Normal, hosted by Sonia Gray has been released. The series explores the intersections of neurodivergence and topics such as work, education, gender, perimenopause, and mental health.
š° Last week, we published a piece on the removal of the Lottery Grant: Individuals with Disabilities fund. Yesterday, the DIA issued a statement:
āWe provided a statement to The D*List last week. As we have continued to work on the new fund purpose, we can confirm that the statement we provided that: āindividuals will no longer be eligible for funding for items such as mobility vansā was incorrect. Under the new structure, the intention is that individuals with disabilities will be able to apply for funding from the Lottery Grants Board.
We are working through how this will operate under the new committee structure and will be able to provide more information in July. We apologise for providing incorrect information and for the concern this has caused.ā
š©° What role does AI play in art? In our latest Carving Space column in partnership with Taha Hotu, Suzanne Cowan writes about Abilitopia, a crip-led performance work that reframes interdependence as a creative force. She challenges us to think about AIās reliance on human coordination, rather than thinking of it as a replacement of human labour.
Abilitopia suggests that when disabled ways of working lead, different values and aesthetics surface: relationship over control, access over perfection, care over speed. Technology and audio description become tools within this ecology of collaboration rather than systems that stand above it. In this sense, the work offers not just a performance, but a small model of how technological futures might be shaped differently.
š Introducing our community reporters programme! Olivia Shivas writes about the mentors that brought her from a fresh-faced university student to her role now as Editor at The D*List, stressing the importance of programmes that nurture disabled storytellers.
š Weāve curated a collection of 17 books by disabled New Zealand authors to add to your reading list. From memoirs to vampire romances, we hope thereāll be something for everyone here.
šļø Taha Hotu is creating an accessible, online database of Deaf and disabled writers from Aotearoa and their published work. If you are someone or know someone who would like to be included in the project, make a nomination here. You can nominate writers who have passed, too. This is will a living kaupapa that gets updated as and when new writing is published.
š Festival of Disability Sport is being held in Tauranga this weekend! From wheelchair basketball, to boccia and sailing, this two-day event in the Bay of Plenty is now the biggest disability sporting events in Aotearoa.
āļø Migrants Against The Acceptable Standard of Health Aotearoa is seeking signatures for their petition to let 16-year-old Paula access the lifesaving medical care he needs while living together with his family in Aotearoa. Soon the family are going to need to seek ministerial intervention to stop him from being at risk of deportation when his visa runs out.
š¤ Finding Common Ground is a collective steering group combining representatives from DPA, EGL, and Te Ao MÄrama Aotearoa (TAMA) to make a shared declaration of disabled peopleās rights in Aotearoa. Youāre invited to contribute by answering their survey before 18th June. The responses will play a part in informing the drafting of a declaration.
On that note, TAMA are looking for tÄngata whaikaha MÄori and Pasifika to join their TÄmaki Makaurau Pou. If youāre interested, email marama.parore@tama.nz your name, address and phone number.
ā MÄ pango, mÄ whero, ka oti te mahi ā
Eda
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https://our.actionstation.org.nz/petitions/stop-the-discriminatory-bill-removing-disabled-people-s-rights-ensure-fair-due-process
Iām a new subscriber, and I wanted to thank you for this informative post.
Thank you also for linking to the YouTube recording of The Hui programme on Dementia Mate Wareware. It was beautiful, emotional, informative, and hopeful.
Most of my lived experience advocacy is focused on Young-onset Dementia Mate Wareware. By that I mean dementia first experienced before the age of 65, often in someoneās 40s, 50s or early 60s, at a very different life stage from the way dementia is often stereotypically understood as only an older age issue.
What struck me about the programme was how clearly it showed local communities coming together to create local solutions. Some of those solutions are exactly what the dementia community has been asking for through the Dementia Mate Wareware Action Plans.
Aotearoa New Zealand has now had two evidence-based Dementia Mate Wareware Action Plans.
The first was the 2020 - 2025 Action Plan. It was endorsed by the Labour Government Cabinet towards the end of 2021 and received $12 million over four years in Budget 2022. That funding supported seven regional pilots, a Health NZ leadership and advisory group, and a Dementia Network development work.
The Wairoa initiative featured in The Hui, involving Dementia Hawkeās Bay in collaboration with Kahungunu Executive ki te Wairoa Charitable Trust, is one of those pilots.
However, the current Coalition Government has not provided further funding to fully implement and sustainably fund the whole 2020 to 2025 Action Plan. Nothing was provided in Budget 2024, nor Budget 2025. The Coalition is conveniently suggesting those seven regional pilots are evidence of them doing something about Young-onset Dementia, but as noted, they did not fund them, rather the previous Labour government did, and they have kept the funding over four years in their Budgets. I guess, at least they didnāt cut them, but that is small comfortable.
The four kaitiaki organisations who wrote both Action Pland then developed a refreshed Dementia Mate Wareware Action Plan 2026 - 2031, noting much of the previous Action Plan was ever implemented. This was formally presented to Associate Minister of Health Casey Costello at the Alzheimers NZ conference in September 2025.
Additionaly, people with Young-onset Dementia Mate Wareware are listed in both Action Plans as a priority community, alongside MÄori, Pasifika, and people living with dementia mate wareware in rural communities.
However, we only found out through written parliamentary questions asked by Labour MP Ingrid Leary, then comments the Minister made in the House, that it appears the Minister has not yet taken the refreshed Action Plan to her Cabinet colleagues. Instead, the actions appear likely to be absorbed into Health NZās existing work programmes, mainly around aged care.
That is deeply concerning.
Meanwhile, people with Young-onset Dementia, their whÄnau and supporters are again left without a nationwide set of age-appropriate and life-stage-appropriate support and services.
As you set out, we are also seeing wider changes, such as those affecting the Total Mobility Scheme, and although dementia services are usually funded through Health NZ rather than Disability Support Services, many of us are concerned about the precedent being set through the DSS Bill. If that approach is later applied to Health NZ-funded dementia mate wareware support and services, it could make an already fragile system even harder for families to navigate.
That is why programmes like the one shown on The Hui matter so much.
They show what is possible when communities are supported to respond to local needs. But they also show why pilots and goodwill are not enough.
We need sustainable national implementation, not another plan left sitting on a shelf.