A disabled Christchurch person whose situation changed dramatically when their husband suffered a head injury during the Government’s disability support funding freeze says the system needs to be able to respond to emergencies as well as meet everyday needs.
Sam* was diagnosed with autism in 2023.
While autism affects everyone differently, Sam experiences autistic burnout and chronic fatigue, which they manage daily with Disability Support Services funding.
This funding pays for support and services that help them function day to day.
But when controversial changes were introduced to Disability Support Services in March 2024, new limits were placed on what disabled people could purchase with their funding.
At the time, families and advocates said they were “blindsided” by the ministry’s announcement, which came without warning and was effective immediately.
For Sam, a use of their funding was to purchase nutritional shakes, which assisted them in times of autistic burnout.
But in July last year, Sam’s husband and primary caregiver collapsed at work and suffered a head injury.
They were off work for six weeks before beginning a gradual return-to-work programme, which took a further 12 weeks before he could resume full-time hours.
“He’s probably about 85% better,” Sam told the Herald.
“He’s exhausted after work, his executive functioning is less reliable, and we still don’t actually know why he collapsed in the first place.”
While caring for their husband and managing their own disability, Sam said essential items that supported their quality of life began to decline under the new funding rules.
This included nutritional shakes that they rely on, particularly during periods of autistic burnout.
Sam said the system should be flexible enough to meet everyday needs while also responding to emergencies, such as their husband’s accident.
“In a better world, when my husband was clearly concussed and had a month-long medical certificate written, I would have been able to contact my NASC [Needs Assessment and Service Co-ordination] to explain, ‘I’ve lost my full-time carer to illness and I will need help’,” they said.
Needs Assessment and Service Co-ordination organisations are agencies funded by Health New Zealand Te Whatu Ora to help people with disabilities, mental health issues, or older adults identify support needs.
Sam said it had been “hard to know what will convince” providers that purchases align with their needs due to a disability.
“Everything has to be justified,” they said.
“If you make a purchase, you have to fill in a form explaining why you need it and how it supports your disability goals.
“When you have a disability like autism, which impacts every facet of life, it’s hard to know what will convince them that a purchase is needed due to disability.
“Often, what are considered ‘normal household items’ would be a life-changer for me.
“Like many disabled people, we don’t have spare money to spend on things to support my sensory needs or social support needs, but where does the line get drawn between accommodation and ‘normal household item’?
“I have to ring each time to ask, or try submitting a quote, both of which are huge asks when even feeding myself is in the too-hard pile.”
But Ministry of Social Development deputy chief executive of Disability Support Services Anne Shaw said from April 1, the purchasing guidelines that came into force in March 2024 would be lifted, meaning there would be a lot fewer pre-approvals.
“Someone in this situation will have greater choice and control in how they spend their funding, for example, on nutritional shakes if those are going to be helpful as a support,” Shaw said.
“People must still use their flexible funding in line with their plans and need to keep their spending within their allocated budgets.
“And of course, flexible funding still cannot be used for drugs, alcohol, tobacco, gambling or illegal activities.
“There will be a small number of purchases that will need pre-approval, for example, international travel, or equipment, to ensure it is safe and right for the person’s needs.”
Minister for Disability Issues, Louise Upston also confirmed people will soon have more choice over how they use their flexible funding.
“Disabled people will have more choice over how they use their flexible funding from April, while keeping the same level of support they receive today,” Upston said.
Upston said steps taken since 2024 to stabilise the disability support system had been successful.
“Because of this, we can now confirm two things, the current purchasing rules will be removed in April, and people’s flexible funding allocations will stay exactly the same as they are now,” she said.
“This means we no longer need to look at what people spent in previous years to set new budgets.
“People will also get more support, guidance or coaching to manage their flexible funding in a way that reflects their situation.”
Upston said flexible funding must still be spent in line with people’s plans.
“A few things will need pre-approval, and people must stay within their allocated budgets.
“However, they’ll have more choice and control over the supports that work for them, including respite options for carers.”
She said the changes reflected feedback from the disability community last year, along with recommendations after a 2024 Independent Review.
“In 2024, some difficult decisions were made to limit rapidly rising costs.
“The 2024 Independent Review found disability support services had unsustainable spending increases, unclear criteria for access to flexible funding, and an unfair postcode lottery for disabled people around the country.
“Since then, we have made real progress in stabilising services.”
She said Disability Support Services had strengthened financial controls, budgets and oversight for NASCs, Enabling Good Lives sites and equipment providers.
Long-standing issues with residential care pricing had also been fixed, and improved the way people’s needs are assessed, and funding for supports is allocated.
“Our Government also provided significant new funding in Budget 2025, with $1 billion to manage demand and inflation pressures.
Upston said these steps mean the system was “financially stable, sustainable, more consistent and easier to use”.
“We can now restore flexibility and choice without creating uncertainty. Disabled people can be confident their support will continue.”
* Name has been changed by request of anonymity.