Families fighting a 20-year battle to be paid for caring for their disabled loved ones are calling for the government to repeal the law protecting a "discriminatory" care policy.
Legislation enabling the policy, which excludes spouses and parents with younger children from payment, and limits family carers to the minimum wage, was rushed through under urgency by former Health Minister Tony Ryall in 2013.
Outrage ensued not only at the policy, but at the part of the legislation that barred legal challenges by saying families could not take discrimination claims against it to court.
In its pre-election manifesto, Labour said it would repeal the legislation - Part 4A of the NZ Public Health and Disability Act 2000 - and that it would ensure all family caregivers could "provide and be paid for assessed care for their disabled adult family member".
However, those subject to the policy are fearful that promise may have been forgotten.
Seven families, known as the King plaintiffs, are taking a High Court compensation case against the Government and say even if they are paid for past wrongs, that won't fix present-day problems.
"It's not about the money any more," said tetraplegic Peter Ray, whose wife Rosemary McDonald cares for him unpaid because of a ban on paying spouses. "The system is broken, and that needs to be brought out in the open."
The Funded Family Care legislation was brought in after an earlier group of families won a 12-year human rights case against the Ministry of Health in 2012, saying it was discriminatory not to pay people on the basis of family status.
Although the legislation fixed some historical issues by finally allowing family members to be paid for their work, it remained discriminatory because spouses, or those with children under 18 were excluded.
And although outside carers were paid market rates, family carers could only be paid minimum wage, for up to 40 hours per week.
Further compensation claims, like that of the King plaintiffs, were limited to those who already had complaints with the Human Rights Commission.
And, in a move a leading law professor has labelled "constitutionally outrageous", the legislation outlawed legal challenges to the new policy - effectively placing the government above the law.
"Now one of our most vulnerable groups have no effective means of pursuing what the law says they are entitled to," said Otago University's Andrew Geddis. "It never should have happened."
The Crown's argument, outlined in a succession of court cases since 2000, was that paying family to care for the disabled would have wide ranging fiscal implications, costing up to $593 million a year.
However, five years after the law was passed, just 354 families accessing the scheme, which was allocated $23 million a year and expected to have up to 1600 families on its books.
"It's no wonder," says mum Angela Hart, from Christchurch. "The process to get it is difficult and degrading, and then you are likely to get only a few hours paid."
She and daughter Gilly, who has muscular dystrophy, believe the legislation and the policy should be scrapped, and replaced with something that doesn't discriminate.
"That's what they should have done in the first place," Gilly says. "Instead they only came up with policies to discriminate in new ways."
The families, encouraged by a recent Court of appeal decision that criticised the policy and the government response to claims, are speaking out about the difficulties they've faced in an effort to hold the Labour Government to its word.
Their pleas follow a petition seeking a repeal, lodged with the Health Select Committee by the Disabled People Assembly, and supported by the Human Rights Commission.
Health minister David Clark said he completely understood the "depth of feeling" on the issue and had the utmost respect for families that cared for high-needs family members at home.
He said he had asked for options on "reforming" Funded Family Care, but the work was at the very early stages and he was not yet ready to comment on it in detail.
Associate health minister, the Green Party's Julie Anne Genter, said she was "appalled" that the families felt they had no option under the previous Government but to take numerous court cases for resolution.
"It is clear that the Family Funded Care policy is not working and that changes are overdue," she said. She too said she was awaiting ministry advice on the best way to proceed.
However, neither would commit to repealing the law outright.
The Ministry of Health said Funded Family Care was under review, along with the rest of the disability support system, which it wants to make easier to access.
Toni Atkinson, Group Manager Disability Support Services, said there had already been some changes to Funded Family Care in the past few years, including attempts to make the assessments more sensitive.
"We're very disappointed to hear feedback that some feel the process demeaning," she said.
The ministry said it was working on a briefing for the minister. It would not comment on how it would settle future compensation claims.
The families' lawyers, Simon Judd and Frances Everard, say they hope they can settle the King claim without litigation.
They were unable to do anything about the families' desire to repeal the legislation, but support them where they can.
"In any situation it's completely wrong to have a law that prevents people accessing the courts," Judd said. "This law is wrong for that reason."
A brief history of family care
2000: Discrimination complaint lodged with the Human Rights Commission about the Government's refusal to pay family carers.
2005: The complaint is unable to be resolved and is lodged with the Human Rights Review Tribunal.
2010: The Atkinson claim is upheld by the Human Rights Review Tribunal, finding that excluding payments to carers of disabled family members was discriminatory and in breach of human rights.
2010: An appeal by the Ministry of Health is dismissed by the High Court.
2012: An appeal by the Ministry of Health is dismissed by the Court of Appeal.
2012: The government announces it will not appeal the Atkinson case to the Supreme court. It instead plans policy to address the issue.
2013: Part 4A of the NZ Public Health and Disability Act 2000 is rushed through on Budget night under urgency. It underpins a limited Funded Family Care policy, and outlaws any further court cases.
2016: Margaret Spencer, the mother of an adult disabled man, is awarded $200,000 compensation by the High Court for discrimination, for the years the Ministry of Health refused to pay her for her work.
2017: The Human Rights Commission complaints of seven families are bundled together as the King case, and put forward as a compensation case to the High Court.
2018: Shane Chamberlain and his mum Diane Moody win their case, which argued the Ministry of Health had wrongly assessed the number of hours Diane should be paid for looking after Shane.