The longest FIGHT
Court of Appeal. Both times the families won.
Finally, the Government backed down. Instead of appealing again, it indicated it would bring in a policy to pay families. Family carers, watching with interest, thought their troubles would be resolved.
On Budget night in 2013, the National Government revealed its solution with an amendment to the law. Passed under urgency, despite fierce opposition, part 4A of the New Zealand Public Health and Disability Act 2000 created the statutory underpinning for a new policy called Funded Family Care.
Then-Health Minister Tony Ryall called it a “compassionate and responsible solution” and said the Crown had acted in “good faith” to respond to the court’s decisions.
“We have carefully balanced providing the best supports for those families with the greatest need, while being responsible with limited taxpayers’ funds,” he said.
Upon reading the fine print, however, the families were despondent.
Not only did the new policy restrict payments to only those with the most high and complex needs, any payments would be at minimum wage, for a maximum of 40 hours per week. It also cut out anyone caring for a child under 18, and anyone — such as Rosemary McDonald — who was caring for a spouse.
Worse, the new legislation said unless a family had already lodged a Human Rights Commission complaint, there was to be no compensation for previous wrongs. And worse still, it outlawed anyone who had an issue with the new policy taking it to court — effectively removing the group’s access to justice, and placing the Government above the law. For many of the carers, it felt less like a win, and more like a slap in the face.
For Peter and Rosemary, it felt like the beginning of the end. They’d already remortgaged their house to make ends meet, and now, without wages, they had no hope of ever repaying it.
“It was the final straw. We were on our own . . . there was nowhere or no one to turn to,” Peter says.
Five years later, they spend most of their time living in a house bus, to save on costs. Rosemary is yet to be paid a single cent for her work.
They weren’t the only ones who felt cast aside.
Talia*, a plaintiff from Auckland, was excluded from the policy because her disabled child was too young to qualify. Sarah*, now 17, was born with cerebral palsy, spastic quadriplegia and severe epilepsy. (*Not their real names). She’s intelligent, but unable to talk and has intense medical needs.
Talia looks after Sarah fulltime, with limited outside support, and refuses to put her in residential care. She isn’t paid a wage, but instead receives a benefit, and says she struggles to pay for rent, let alone the expensive equipment Sarah needs. They wear charity clothing, and frequently miss out on respite care because they can’t afford the money for transport.
“Basically, that policy change screwed us overnight,” Talia says. “The state thinks that if you’re looking after a disabled child it’s part of natural parenting.
“But there is a complete difference — I’m providing intense, neurological nursing. It’s not related to natural parenting.
“There’s nothing natural about a 17-year-old in nappies, who has feeding tubes sticking out of them.”
Talia, who used to work in human resources, says being on a benefit has also been stigmatising, and affected her self worth. She has no retirement savings, and hasn’t been allowed to study.
“I have no future to look forward to. I have no worth in this country. I feel like I’m doing my best but I am a nothing.”
the Atkinson hearings, and the two subsequent cases, the Government has relied on varying arguments as to why families should not be paid. The “natural support” line was one of those, making the case that there is a social obligation that requires family to look after each other.
In Cabinet papers before the Funded Family Care legislation was passed, it outlined other risks — some recognised as valid by the disability community — that it could taint the relationships within families, or that there was potential for fraudulent financial gain, or abuse.
The Government’s strongest argument, however, has always been about money.
If the policy of not paying families to look after their disabled whanau was overturned, they said, the floodgates would open and it would end up costing as much as $593 million a year.
So far, those fears have not been borne out.
When it introduced the Funded Family Care policy, the previous Government estimated 1600 families would be eligible to receive funding from the scheme, putting aside $23m a year. As of 2018, only 354 adults are using the scheme.