New research into support for family carers of the disabled has sparked calls for urgent change, after study participants labelled the current system "disgusting", "discrimination", "nonsense" and "appalling".
The study, commissioned by the NZ Carers Alliance, interviewed disabled service users, their families, officials, lawyers, advocates and health workers - finding widespread discontent and scepticism about the Government's commitment to paying families for care.
Those interviewed said the policy - brought in under the previous National government - was exclusionary, unfair, complex and the legislation it was based on was unlawful.
"In summary, by far the majority of informants called for an immediate review of the family carer payment schemes and policies to make them fairer," the study said.
"Choice and flexibility, along with fairness and non-discrimination, are called for."
Earlier this year, a group of families also spoke out in the Herald, asking for the Government to repeal the law underlining the current policy, known as Funded Family Care (FFC).
They described 20 years of living with no payments; living on a benefit despite carrying out the work of a professional carer and being paid for just a few hours when they were essentially working a full-time job.
On Monday, Grant Lovett and his wife Glenda came forward saying were living on food parcels, struggling to survive as Grant slowly died of motor neurone disease. As his spouse, Glenda is excluded from payment.
Before that, a Court of Appeal decision had also criticised the policy and the Government response to compensation claims, and said it did not want any more challenges to the issue in court.
Legislation enabling Funded Family Care, which excludes spouses and parents with younger children from payment and limits family carers to the minimum wage, was rushed through Parliament under urgency in 2013.
Outrage ensued not only at the policy, but at the part of the legislation that barred legal challenges, saying families could not take discrimination claims against it to court.
Health minister David Clark and associate health minister Julie Anne Genter have said FFC is under review, however Carers Alliance spokeswoman Laurie Hilsgen says the study is proof things need to change immediately.
"We don't need more consultation to make improvements to Funded Family Care, it's been consulted to death," she said.
"Families have waited a long time for improvement and it's time to get some progress."
Because of a significant underspend on the policy - Treasury appropriates $23 million a year but only $8 million is spent - she said initially, any change wasn't about money.
"Currently, the funding is very hard to get, and there's a lot of injustice in the policy. They can improve both of those things right now and we would like them to do that."
While Hilsgen had been part of the "working group" process before Funded Family Care was passed, she said the process was flawed, and the Members of Parliament who voted for it should "examine their consciences".
"It was a cynical process and not something that any of us involved were proud of. I felt used. And it had a very human cost. I would not want to see that process repeated here."
The study had been sent to ministers last week, with a timeline of suggested changes.
Associate minister Genter said it was clear that Funded Family Care was not working and that changes were overdue.
"The report highlights one of the worst human rights violations of the previous government," she said.
Genter said she was working with other ministers to ensure progress in this area and hoped to have an announcement very shortly.