At least one large disability support provider has completely run out of funding to provide support to autistic people.

"I'll tell you right now, you're not getting anything"

According to the needs assessor who came to my house yesterday, people with new autism diagnoses are no longer able to access funded support through their organisation - regardless of eligibility, health and safety risk, or need.

This is because the National-led (and ACT and NZ First driven) governments have decided that disability support is an optional extra, an extravagance for the people that aren’t as good as they are.

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A quick aside, before I get into this. I write for free, when I want to and when the motivation takes me. I do not charge for subscriptions because I can’t afford to lose any of my Supported Living Payments (SLP) for the crime of “earning too much”, which also means I cannot get ahead, cannot save large sums of money, and am stuck with the choices I have. I chose to become a single parent before the pandemic disabled me to a point I could not function and before we were blessed with a government that believed disabled children and their carers deserved nothing. I am a strong believer in making good out of bad and I’m fuelled by furious adrenaline and the consolation Toffee Pops gifted to me by a good friend, so I am writing this now. If this vibes with you, you can subscribe to my Substack for free.

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I have written, and been interviewed about, extensively on the topic of disability support. I have focused the bulk of my Master of Health Policy, Planning and Service Delivery on the topic. I am conducting part time research into how care rationing compels disabled people to stay in whānau violence contexts because they have no other options for care. I know personally and academically how dire the state of disability support in Aotearoa has become.

I have had Long Covid since the 6th of April 2022, and Myalgic Encephalomyelitis and Postural Orthostatic Tachycardia Syndrome since 2015. My ME and POTS were well managed until Long Covid came to bite me. I have an extensive mental health history that has been in remission for several years, inclusive of Pre-Menstrual Dysphoric Disorder, Complex Post-Traumatic Stress, and Anorexia Nervosa attributed to gender dysphoria. I am no longer traumatised, but deeply burnt out. I, like most parents, made a reasoned choice to have a child knowing life might not always stay the same, but there was never “the best” time. I anticipated a high likelihood I’d end up with a neurodivergent child and I did, genetics run strong. She was diagnosed with Autism and combined type ADHD in January 2025, after nearly two years of waiting and longer of suspecting.

I’ve been personally referred for needs assessments several times under the Needs Assessment and Service Coordination (NASC) process for disability, and been unsuccessful. I have also been unsuccessful accessing care through Te Whatu Ora’s Long Term Health Conditions pathway (LTHC). I’ve found out that two of my conditions, Long Covid and ME, sit on exclusion lists that prevents people like me from accessing any Disability Support Services (DSS), whether funded through NASC or LTHC. For several months after developing Long Covid I depended on a partner who chose to treat me abusively for care, and I had to choose between leaving them or having meagre support for my child and I. I made the choice that kept us safest.

I’ve also been assessed for Autism myself, but the student psychologist assessing me could not distinguish between my definitive autistic traits and my post traumatic stress. She told me she’d diagnose me if I wasn’t also traumatised. Living on SLP due to chronic illness means I cannot afford a reassessment now that I am no longer acutely traumatised.

I have the needs and function that would make me eligible for NASC on my own, and a diagnosed autistic child who is definitively eligible herself.

And yet, we still cannot access care and support.

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I cannot divide this article neatly into her needs and mine, because we are a unit. Our disabilities impact each others’, and we are muddling along as well as we can. I spend my life hypervigilant because since she was 3, my child likes to take off for surprise walks by herself. I have stopped her diving into traffic before. I struggle to cook for her, to maintain the house, to stay on top of laundry because I have deep fatigue crashes, much of the time triggered by the physical exertion of chasing her down the road or removing her from whatever she’s decided to climb this time. My exuberant little one can walk 7 kilometres straight and barely be tired by the end, but 200m sends me to bed on the wrong day. She walks out of class whenever she pleases and calls me names no matter how I phrase an instruction or request. She tests below her true level of skill and knowledge at school because she can’t be bothered with the tests, and then she gets bored with the lack of challenge in her work. She has an intense social drive, requesting the next playdate with someone else right that minute before her last friend has even walked out the door. She doesn’t even notice that I am falling asleep while she tells me a forced, long winded story about something or another.

I am not depressed, but I am phenomenally burnt out.

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I am so burnt out that I am struggling to eat; first due to a total lack of appetite, but over time now with an added fear of eating. I stopped sleeping in January, despite a reset course of sleep meds. Writing this is the first my brain has been able to focus since January, which isn’t ideal as someone writing their final Masters research project. We are not in a sustainable position and I have been doing everything I can to get us out, but the doors are hitting our faces as they slam closed.

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So we had our first Needs Assessment under the NASC Autism pathway, referred by the ASD coordinator at our paeds department after our diagnosis. And our blatantly burnt out, well-intentioned, but refreshingly honest Needs Assessor informed my support person and I that the funding pot is completely empty.

To be clear: Unless someone requires residential care (which still holds a 6 month waitlist), newly diagnosed and referred autistic adults and children are, apparently, now unable to access any support under the NASC Autism Pathway through Kia Roha.

This closes the door in our face to respite hours, sensory equipment funding, occupational therapy, carer support, and support work. All essential and critical services to support parents to meet the needs of their autistic tamariki.

Whānau already receiving funding are still being funded, but as well-publicised, with further restrictions and rationed funds.

I would never want to be in the position of our needs assessor yesterday - in a stranger’s home, telling them that despite spending two entire years fighting the public health system for assessment and diagnosis, despite all the eligibility rules, despite their sheer burnout, despite their child’s high needs and volatility, despite the injuries they’ve sustained parenting a neurodivergent child, despite their own disabilities, the money to help them is gone.

All she could give me was parenting advice, and unfortunately that won’t get the laundry done to let me spend quality time with my autistic child, or pay for the replacement stim toys she’s breaking from use on the regular.

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Funding decisions for disability support streams like NASC, LTHC, and more, are the responsibility of our government when they set the annual budget. For decades, services have done their best in the face of discriminatory underfunding. Aotearoa is a signatory to the United Nations Convention on the Rights of Peoples with Disabilities, or the UNCRPD. This voluntary agreement was ratified by Aotearoa in 2008, by the National government at the time. Three reviews have been conducted since then, and there are still 33 areas of concern for the human rights of disabled people. The 28th reads:

The Committee is concerned about:

(a) The disproportionate levels of poverty among persons with disabilities, who are twice as likely to live in poverty than the general population, and for Māori persons with disabilities, who are three times as likely to live in poverty, and the protracted implementation of the recommendations from the Welfare Expert Advisory Group report;

(b) The fragmented model of support for persons with disabilities, and the disparity in access to health care, habilitation and rehabilitation services and income support between those who are eligible for coverage under the Accident Compensation Corporation and those who are supported through the disability support system, with those in the latter category more likely to face barriers in maintaining an adequate standard of living;

(c) The exclusion from the disability support system of people with foetal alcohol syndrome disorder, chronic fatigue syndrome and other chronic and rare conditions.

This is my favourite section of the UNCRPD reports to whip out for an essay, because it sums it all up. Disabled people can’t afford life, we can’t get help, and Aotearoa leaves people like us in the dirt for having the wrong cause of disability. And yet, there is no political motivation to fix it. John Key’s government committed to dealing with it in 2008, and Christopher Luxon’s government is refusing to in 2025. In fact, I speak to people most weeks who have just assumed that the welfare system helps disabled people, simple as that. “If you were really disabled, you’d have been given a rollator”, I was told once, as if you magically pop out the womb when you’re born with your disabled club membership card and a whole arse mobility aide. It’s not ever been a real election issue cos people don’t care enough to notice that things aren’t already fine.

But disabled people are everywhere, in every neighbourhood, maybe less so in the rich ones with preventative healthcare and access to a safer life. Maybe not everywhere, given all the places we literally can’t access, and all the ones with additional barriers. But we’re your neighbours, your family members, your friends. Why am I trying to humanise us? Why am I resorting to this?! Why aren’t we just valued as human beings who are worthy no matter our contributions to this society and supported because we’re human and have an integral right to it?!

Why shouldn’t we be an election issue in 2026, or headline news every day until this is fixed?

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At least one NASC provider, Your Way Kia Roha, is entirely out of funding to provide support to new clients. From what I’ve learned so far since the hui, it has been this way for several weeks. I have seen no publicity drawing attention to it, no public demands for appropriate funding, the issue hasn’t even been worthy of some piece-of-shit excuse from a government minister yet.

So.

If you know of other providers in the same waka, please comment here and let me know.

If you have been declined support for the same reason as us, please comment and let me know.

And please share this piece, far and wide. Share it with your members of parliament, share it with your neighbours, share it with other disabled people and other parents of autistic kids. Send it to the Minister for Disability Issues, Louise Upston at L.Upston@ministers.govt.nz with a demand to know why autistic kids don’t matter to her government. Paint it all fluorescent and glaring on a bridge (here I have to say actually no don’t do that one, and if you do that’s on you not on me).