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 emergency situations, 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.
Ministry of Social Development deputy chief executive of Disability Support Services Anne Shaw said how much funding someone receives is determined by their Needs Assessment and Service Co-ordination (NASC) or Enabling Good Lives (EGL) site, following a needs assessment.
“Decisions on spending are the responsibility of each person, with the support of the host provider,” Shaw said, noting that expectations are that spending decisions align with purchasing guidelines that remain in place until April 1 this year.
Shaw said records from Sam’s NASC indicate that funding for nutritional shakes was declined in August 2024 as they were “not aligned to the purpose of the funding allocation of Respite Care”.
Shaw noted that Sam had a respite funding allocation still available.
But Sam said it was “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.”
Shaw said they understood the impact that changes to the purchasing guidelines have had on the community, including on the people spoken to for the report.
“We’ve consulted widely with the disability community, and as a result, some significant changes will be made to flexible funding and the disability support system in February and April [2025],” she said.
“People will get more choice and control in their use of flexible funding.
“The Minister for Disability Issues announced these changes on September 3 [2025], which include the removal of the March 2024 purchasing guidelines and the introduction of new flexible funding budgets,” Shaw said.
“The changes are significant for disabled people, families and carers.
“Disability Support Services is working hard to ensure the processes, systems and tools are in place when the changes start taking effect.
“In Budget 2025, the Government boosted funding for disability support services by $1 billion over four years to support demand and meet the increasing costs of disability support services.
“With the removal of purchasing guidelines from April 1, 2026, disabled people will have more choice and control over how they spend their flexible funding within their budget and agreed support plan.
“The changes are designed to make it easier for people to choose how they spend their flexible funding to address barriers linked to their disability.”
Shaw said that if someone’s situation has changed and they have concerns, they should get in touch with their NASC or EGL site to ensure they are getting all the support they are entitled to under the current settings.
* Name has been changed by request of anonymity.