More than just B-roll: Where were our voices in the news about disability funding?

This week, Disability Minister Louise Upston announced the long-awaited updates to disability support services.

After consultation with the community, the Government will remove the strict purchasing guidelines and bring back flexible funding from April 2026. But our new flexible budgets will be reallocated based on how much we used between June 2023 to June 2025 — 15 months of that was with the March 2024 restrictions when many of us couldn’t spend our budgets.

And while we could unpack this announcement over multiple articles and Instagram reels on what it means for our community, my initial response to the news was: Where are the disabled people?

After reading all the articles related to the announcement, I could only find one article centring the perspective of a disabled person (kudos to Waatea News). Apart from that, voices from the Government were front and centre of the media coverage. 

Disability Minister Louise Upston said: “We know some difficult decisions had to be made in 2024 to limit ongoing acceleration of costs. Since then, we have done more work to make sure disabled people, their families and carers have a system they can trust and is easy to use.”

In response to questions that budget allocations will be based on past usage, the Ministry of Social Development’s Alastair Hill said: “Yes, people have previously been allocated funding that they did not spend within the allocation period. We recognise that in some cases that may have been due to restrictions to the purchasing guidelines that were put in place in March 2024," Hill said.

"That is why, when we set the new flexible funding budgets, we will consider the spending period from June 2023 - June 2025, so that budgets reflect people's previous spending, prior to March 2024, where that's relevant."

Meanwhile, Labour's disability issues spokesperson Priyanca Radhakrishnan said: “Christopher Luxon should apologise for the pain he has put disabled people and their families through with his flip-flopping on flexible funding.”

A lot of media coverage also focused on ex-Disability Minister Penny Simmonds’ handling of the situation last year and how she lost the disability portfolio as a result. But there wasn’t much about the future — what are disabled people’s aspirations with this new announcement? 

One news outlet framed up their article around parents while another was focused on reactions from chief executives of carer organisations. There is no doubt that whānau and carers play a vital role in supporting us to live our best lives. If it wasn’t for the respite care my parents received when I was a child, I could imagine them getting burnt out, and support workers enable me to achieve independence in my life. But with an announcement that directly impacts disabled people, isn’t it glaringly obvious you’d interview disabled people on what they think?

Centring our voices 

We’ve been talking about this update at length at The D*List office and while we aren’t representative of all the voices in our community, some initial questions and wonderings were raised.

• The release says spending on DSS has been “unaffordable”. According to who? By what measure? Isn’t this just what it costs to allow disabled people to live in dignity?
• The announcement also talks about consequences for “inappropriate spending”. What consequences? And “inappropriate” according to who?
• What is the new tiered system and will it be equitable? Will those at the lower tiers be left behind?
• Will this new assessment process give too much power to the NASCs and their decision-making?
• Is previous spending really a good estimate of what people need today? How will NASCs ensure they are supporting people whose needs have changed? 

We also did a call out on The D*List Instagram yesterday to find out your thoughts. Some were feeling hopeful: “It’s a step in the right direction. I still 100% think we have more work to make it more fair though.” While others are more cautious: “Concerned about the stealthy mention of future funding being tied to spend over the last 2 years,” said one commenter, while another person said: “I also have trust issues with this Government. Are they going to change their minds again in a year?”

In the meantime, we’ll wait and see how this plays out in April and hopefully get some clarity until the announcement changes kick in.

Much of the TV news coverage of this was filmed at Disability Connect’s Transition Expo in Tāmaki Makaurau and there was plenty of B-roll of disabled people in the background to Upston’s announcement. But we are more than just B-roll — we should be the main character speaking out about the decisions impacting our lives.

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