The Government says its new Disability Support Services Bill will make a complicated system easier to navigate. But outside Parliament, many of the people it affects say it will do the opposite.
They’re angry and worried, accusing ministers of stripping away years of hard-won rights.
“It’s Trumpian … this is what Trump does: he doesn’t like something so he moves to legally override it,” long-time disability advocate Jane Carrigan tells The Detail.
“It’s got nothing to do with consultation, it’s got nothing to do with fairness, equity, transparency … it’s got everything to do with trying to shut down people and [the Government is] doing it in the cruellest and most perverse way.”
The legislation is designed to create a formal framework for disability support funding, bringing together what has been called a “fragmented system”.
The Government says the bill will improve consistency, fairness, transparency, and sustainability in disability support, while clarifying funding, assessments, and the role of family carers.
RNZ National health correspondent Kate Green says, at face value, that’s something many families have been asking for.
“This bill aims to set a formal framework for funding,” she tells The Detail. “Disability funding over the past little while has been quite fragmented for families to navigate … it’s confusing, and it’s time consuming. So this bill, first of all, aims to change that and make it simpler.”
But she says it’s another part of the bill that has people alarmed.
“It also potentially … puts more of the onus on families rather than the government, which is why it’s got people so concerned.”
For Carrigan, the issue is deeply personal.
More than a decade ago, she began helping a mother caring for her son under the Funded Family Care policy.
“She had been allocated 11 hours [a day] for her 24/7 son,” she says.
“What took me a year to fully appreciate was that the Crown was absolutely working studiously against families getting the funding.”
What followed was years of legal battles.
“That process took us three and a half years, and we won in the Court of Appeal, and the Crown turned around and completely ignored it. They’ll say … they tweaked here and there, but in effect and in practice they completely ignored it.”
When another family found themselves in a similar position, Carrigan took a different path.
“It took six years to get us to the Supreme Court and the Supreme Court … accepted that the work that mother was doing was disability support services, which made her an employee of the Crown.”
That landmark ruling in December last year meant family carers could potentially access employment rights, including minimum wage, annual leave and sick leave.
But Green says the new bill effectively draws a line through that decision.
“It prevents people seeking a ruling in court,” she says. “This bill basically stops every case that is underway. There are something like 40 more cases that popped up after that landmark decision … so people are really concerned that it places too much of a burden on families.”
Carrigan says this has never been simply about employment status.
“They have to be recognised for the work they’re doing because that [work] is what they’re doing.”
She points to research estimating family carers were providing billions of dollars’ worth of unpaid care every year.
“The bottom line is [in New Zealand] we’re a community that saves a buck off the back of exploiting individuals.”
For many carers, the reality is relentless.
Green recently spoke to one mother, Victoria Coleman, who shared just how close she came to breaking point.
“She reached a really low point where she was considering suicide,” Green says. “She needed support … all while still caring for her son.”
Green says caring for a disabled family member often isn’t a standard full-time job.
“It’s really every hour of every day for these carers,” she says.
“You can’t leave your job at work. And often … that money just goes back into the care … into therapies, into equipment for the house.”
The speed of the legislation has also become a flashpoint.
“There was a quite short process,” Green says. “It was three weeks … and people in the disability community were saying ‘We’ve already got access problems. It would be really nice if we had a bit more time’.”
Many also questioned why select committee hearings were only held in Wellington, making it harder for disabled New Zealanders and carers around the country to participate.
But Disability Issues Minister Louise Upston has said the new legislation was written after consultation with the disability community.
Carrigan hopes the Government will still listen to the bill’s opponents.
“It’s not just about slinging money at people,” she says. “It’s about providing the support systems.
“We have to shift away from that mentality [of] what’s the cheapest we can get away with providing?”
As submissions continue, opposition to the bill appears to be growing.
Green says eight national disability organisations have spoken against it.
“These big organisations, representing hundreds of thousands of people, are coming out and saying this bill can’t go through as it is.
“It’s unclear. It’s potentially opening the door for this burden to be placed on families. And I think that really speaks a lot to the fact that the concern is shared by almost the entire community.
“Most of the submissions we’re hearing were negative. And I wonder what they’ll do from here. It seems everyone’s calling for a halt or a rewrite.”
In a press release, the Labour Party said that if voted in, it will repeal the bill, replacing it with “legislation developed alongside disabled people that protects their rights, independence and choice”.
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