‘I’ve never seen a more disgusting piece of legislation’: Paid family carers decry law change

Thursday, 21 May 2026

Families of disabled New Zealanders are calling a new government bill designed to provide a “foundational legislative framework” to Disability Support Services “unfair” and “disgusting”.

The bill was introduced by Disability Issues Minister Louise Upston this week and is set to have its first reading on Thursday.

Upston said Disability Support Services (DSS), which sits within the Ministry for Social Development and funds care for about 55,000 disabled people each year, has been “operating without a clear legislative foundation”.

“This has made it harder for people to understand what support is available, who qualifies, and how decisions are made,” she said.

But according to some of the individuals affected, the law change - which would reverse a recent Supreme Court decision recognising some family carers as employees - will actually reduce certainty and increase stress for caregivers.

Victoria Coleman is the primary caregiver for her seven-year-old son, Levi. He was born with Down syndrome and two rare bowel diseases, among other conditions, which mean he is non-verbal and fully dependant on 24/7 care.

“He is very high needs,” Coleman told Stuff. “He needs full-time supervision for safety reasons. He can’t be left alone, even for a short time. It’s day and night, 24/7.”

Coleman cannot work outside the home and relies on DSS for funding, invoicing the ministry for her work.

“The funding is spent on items or services for him, like it goes to his speech therapy and buys him sensory items and things like that. And for me, it pays for some of the work I do,” she said.

“So how can they say they are not my employer? In every way, they are acting as my employer.”

After the Supreme Court ruled in December that Peter Humphreys and Christine Fleming were employees, Coleman lodged a case with the Employment Relations Authority (ERA) for similar recognition.

If this bill passes, it will not affect Humphreys and Fleming’s statuses, but it will bar any other carers from making similar claims.

That would include extinguishing Coleman’s case.

Humphreys told Stuff that he cannot comprehend how the Government could do that.

In deciding his appeal, the Supreme Court found he was a “homeworker” and an employee of the ministry. The judges also found that Fleming’s work to care for her son fell within the definition of “work” under the Minimum Wage Act 1983 - leaving the door open for other family carers to make similar claims.

“Five judges unanimously said that it was wrong not to look after caregivers and to see them as employees … I think it’s just unfair that parents are having to look after adults with disabilities and without the support they need,” he said.

“People have given up their careers, given up their ability to save for their retirement … me and Christine will be fine because we have this golden ticket from the court, but what about the rest of them?”

Upston disagreed, telling Stuff on Tuesday that it was never the ministry’s expectation that they would be an employer of family paid carers.

According to a spokesperson for Upston, the introduction of the bill will not change existing services, funding allocations or who can receive disability support services. Eligible disabled people, their whānau and carers will continue to receive the support they rely on, they said.

Coleman said her concerns with this bill are multifaceted, but she is particularly concerned that it is taking away her right to continue her case in the ERA.

While she does get paid by DSS for some of her care work, she is not afforded the protections of an employee.

“It’s not always minimum wage, it depends. And that was what the ERA would determine, because it’s a murky situation.

“Levi is a minor, but he has needs far above a typical child - so the ERA would determine what portion of those needs are disability, what portion is the government responsible for, and what portion as parents of a minor are we responsible for.”

Without that determination, Coleman said it is up to the Government of the day to determine how much funding they should receive.

“If a company was operating like that, they would be obliterated. Nobody would let that happen,” she said.

As for the minister’s message that the bill is designed to provide DSS with a foundational structure, Coleman said that was “bald-faced lying”.

“All they are creating is absolute uncertainty. I can tell you that now - all I see is unlimited power, and we have no idea what will be done to us. There is no certainty in that bill for families.

“If we’re not employees, the Government could withhold funding, they could strip funding - they could do all sorts of things if they wished.”

Upston said officials are working on a broader carer support package, which she hopes will land by the end of the year.