On 15 August 2025, I met with Kaikaranga (formerly Taikura Trust) to discuss my ongoing complaint about disability support funding. Alongside me was my support person, Sara, and present were Sonia Hawea, Kaikaranga’s CEO, and Keven Palmer, their Head of Standards and Assurance.
I began with a karakia, grounding myself for what I knew would be another difficult conversation. For the past six to eight months I’ve felt vulnerable, caught in a process that is supposed to support me but instead has left me frustrated, anxious, and at times feeling punished for simply asking for fairness.
At the heart of it is respite funding. For two consecutive years, two different staff members allocated me this funding. Now, I’m told I was never eligible. If it was an error, how many others have been affected? And why am I the one penalised for raising it?
On paper, this may look like a budget issue. In reality, it affects everything about my life: my independence, my safety, my mental health — and the security of the people I employ. Sara and two others rely on me as their employer. I want to be a good one. Yet I’ve been pulled through a system that tells me I was “wrong” when all I’ve done is live within the allocations given.
Kaikaranga acknowledged process flaws and historical inconsistencies — the so-called “postcode lottery.” They admitted that funding silos and mistakes during COVID allocations have left people like me caught in the middle. Their interim solution is to continue my current allocation for three months, then halve my respite funding, while Sara and I re-document my needs. If the revised support package exceeds $105,000, it will go to MSD Wellington for endorsement.
Here’s the truth: my needs don’t fit neatly into categories or silos. They are unpredictable and complex — falls, wheelchair malfunctions, the anxiety that comes with disability. Sara’s role isn’t domestic or optional; it’s intimate, safety-critical support that keeps me alive and participating in the world. Yet the system has no box for that.
In the past, I’ve held back because the allocation was “close enough.” But “close enough” isn’t good enough. Not when my life, my safety, and my employees’ livelihoods depend on it.
I left the meeting still worried about Sara’s financial security, still frustrated with a system that seems designed more to protect silos than people. But I also left with a glimmer of hope — hope that by documenting reality as it is, and not as the system imagines it, we might finally shift toward funding models that recognise people, not just policies.
I closed the meeting with a karakia. It was my way of honouring the process, of holding hope, even in the face of a system that still feels broken.
