Minister for Disability Issues Penny Simmonds. Photo: RNZ / Angus Dreaver
By Georgie Hanafin
For disabled Christchurch man Nick Stoneman hunger is a familiar feeling.
Living paycheck to paycheck and struggling to juggle the costs of having disabilities with keeping his power and phone connected is exhausting and unfair, he said.
Stoneman relied on a full-time supported living payment, but said changes to individualised funding meant he did not qualify for extra support.
Born with an averted foot, where the foot points downward and inward, Stoneman used a specialised wheelchair from a young age.
From the moment he was born he wore a frog splint, designed to keep his legs splayed and his foot in the right position, which improved his ability to walk. But, he still suffered from chronic pain and ongoing problems with mobility.
He also had autism and mental health issues which are compounded when unexpected bills arise.
Stoneman said his supported living payment barely covered the basics and forced him to choose between treatment and groceries.
"I'm quite often left hungry and I can't afford to go to the supermarket and put food in the trolley. The times that I can go to the supermarket and do that, generally I'd try spend no more than $30 a week. And $30 a week doesn't cut it," he said.
He was among a chorus of people furious at Minister for Disability Issues Penny Simmonds for comments she made about how disability funding was being used.
The new rules for purchasing equipment and support services have sparked widespread distress and anger among the disabled community, and a petition opposing the changes attracted more than 10,000 signatures in its first 24 hours.
Stoneman said people should have the freedom to use their funding however they choose.
"We shouldn't have to justify what we've spent the money on so long as it's clearly defined that we don't spend it on lotto tickets, alcohol, that kind of thing. And most people with disabilities wouldn't be able to afford alcohol, let alone buy Lotto tickets."
Many people were forced to resort to advances from the Work and Income to manage their finances, resulting in significant debts deducted from their benefits, he said.
Renee Cossey, who cares for her daughter with autism, said carers were justified in how they spent their funding.
The job was incredibly physically demanding and it made sense people would use their funding on hair cuts and massages, she said.
"They're using it to repair their hair that's been half yanked out of their head or that looks a mess because they've spent all day with a child thrashing them and moving their hair out the way, or lifting an adult child and spraining something, or looking after a parent who doesn't remember who you are and only remembers you when you have your hair dyed blonde, because you were blonde as a child."
Her family got $760 of 'personal care' individualised funding per year, which excluded household management and respite care, and was meant to support her daughter in learning basic life skills, like regulating her emotions.
Cossey had not used her funding to pay for travel, but said that was within the guidelines and was the most cost effective way to get respite.
"It's great for us and it's great for our child because she comes back relaxed, we come back relaxed, and when we start into our duties again caring, it feels like, yeah, we can cope with this now."
Christchurch carer and mum-of-four, Jo, who did not wish to use her surname, said the changes took an already small world and made it even smaller.
Jo's mum, who was in her 70's and had cerebral palsy, moved to Christchurch from Palmerston North in 2022 to be closer to family care.
Jo said her mum had every right to spend her funding visiting friends, attending funerals, and going to events back home in Palmerston North.
"She would need a carer to come with her. She cannot get on and off a plane by herself. She cannot even get into a toilet on her own. She has every right to go to that funeral and have a carer paid for," Jo said.
While she looked after her mum, Jo's husband Terry is at home caring for their three disabled children, aged between 14 and 21.
The couple's eldest son needed round-the-clock assistance with simple daily tasks and had access to $10,000 of individualised funding.
At first the family was overwhelmed with the idea of so much money focused on their son, Jo said.
However the amount left after deducting payroll fees, ACC, superannuation and other expenses would only be enough to pay a carer for about two hours per week, she said.
"I think my first words were, thank you so much. And then I went, hang on, hang on. If I drop dead tomorrow, how the hell, what happens to him? You can't pay someone 1.8 hours a day to after him. His needs are much higher than that."
Simmonds declined to be interviewed, but in a statement said improvements were needed.
"We all want to see the best outcomes for the disabled community and their families, and it is clear there needs to be improvements to the services delivered.
"That's why I am urgently prioritising an independent review to understand and set out to fix the ongoing issues the Ministry faces."
She said the Government was committed to the disabled community and would be providing "considerably more money at the next Budget".