For almost 20 years, families of the severely disabled have been fighting to look after their loved ones at home, and to be paid for it. Now, the battle is going beyond the courts.

Like a precious gift, the Appeal Court judgment was forwarded carefully through cyberspace. Emails shuttled from lawyers, to academics, to journalists and back again. Some had subject lines like "this is interesting" or "check the postscript". The most honest had "holy hell" and six exclamation marks.

The next day the case was all over the news. The ruling was hailed as a huge victory for the disability community, as well as the plaintiffs - a disabled man named Shane Chamberlain and his mum Diane Moody - who had taken on the Government over payments made to family members caring for their disabled loved ones, and won.

Quietly, away from the public celebrations, a small group of families involved in another court case also read the judgment, and allowed themselves a fleeting moment of hope.

"I can't stop smiling," one of the group wrote on an email chain.

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"I love this," another said.

In particular they noted the court's criticism of the Ministry of Health's "impenetrable" Funded Family Care policy, and the sternly-worded suggestion to settle other claims without litigation.

The families agreed: "It's going to be very interesting what happens now."

And then, they waited. A couple of days went by. "We are considering its implications," the Ministry of Health said. A week. "We are confident we can settle our case out of court," the families' lawyer hinted. Another week. Silence.

Slowly, the flutter of hope began to fade. The families went back to their daily chores of cooking and toileting and medicating and cleaning and surviving. And as they did, the anger that had been momentarily suppressed began to bubble up again.

Peter Ray hopes he dies before his partner and caregiver Rosemary McDonald, so he never has to rely on the state to care for him again, as he did before they met. Photo / Doug Sherring
Peter Ray hopes he dies before his partner and caregiver Rosemary McDonald, so he never has to rely on the state to care for him again, as he did before they met. Photo / Doug Sherring

"I am under no illusions whatsoever about how the Ministry of Health will respond to it. They don't care, they never have," says Rosemary McDonald, 57. "Quite frankly, they're a bunch of bastards. You get the feeling that they actually actively hate disabled people."

Read more:
Family carers issue heartfelt call
Angela and Gilly's story
Peter and Rosemary's story
Sushila and Royd's story
Talia and Sarah's story
June and Maraea's story

Rosemary and her partner Peter Ray, 67, a tetraplegic, make up one of seven families to be heard in the next Funded Family Care case. Known as the "King" plaintiffs, they are seeking compensation in the High Court for lost wages for the years when the Ministry of Health wouldn't pay them for their work as carers, because they were family of the disabled person.

It's an issue that's already been extensively turned over, with multiple discrimination findings now tallied against the Health Ministry, and a handful of claims paid out. However this time, with the combination of last month's scathing ruling in the Chamberlain case, and the change in Government, the King plaintiffs hope there will be more to their story than just compensation for past wrongs.

What the families really want is a law change, and a fairer policy, so no one else has to go through what they have endured.

"It's not about the money any more," says Peter from his wheelchair. "The system is broken, and that needs to be brought out in the open."

"I have no future to look forward to"

To understand the families' bitter fury, you have to listen to their stories. Sometimes, that means going back to the start.

For years, the Ministry of Health had a ban on paying family for looking after their disabled whanau, even though they would pay for residential care, or for an outsider do the job instead.

And because caring was frequently a full-time job, and many carers had to give up their paying jobs to do so, most families were left without an income.

Instead, families who cared for the disabled at home survived on social welfare, or ad hoc disability payments, making do with a few hours a week of funded support, and a patchwork of respite care when they were sick, or needing a break.

It was tough work, but they did it.

June Rameka (left), has found it a struggle caring for her intellectually disabled daughter Maraea, 32. Photo / Alan Gibson
June Rameka (left), has found it a struggle caring for her intellectually disabled daughter Maraea, 32. Photo / Alan Gibson

June Rameka, who cares for her 32-year-old intellectually disabled daughter Maraea, says looking back, she doesn't know how she coped. Maraea has numerous complex behaviours, such as self-harm, excessive hair-pulling, and a low attention span, that means she can never be left alone.

"We were dropped from respite care, because her needs were too high. She needed two carers, and I understand it was too expensive," she says.

"Another time we had carer support cancelled. The [contractor] said it was because of my unreliability, to pay for equipment or pick Maraea up. But I had very little money. [They] described me as having a history of demanding additional carer support, but I was simply struggling to cope as a solo caregiver."

In rare cases, if there were two parents, one would try to keep working rather than going on the benefit, some with dire results.

Sushila and Royd Butt, plaintiffs from Kerikeri, continued to run their small horticultural business as well as caring almost full time for their two disabled adult children. Ashneel, 26, and Alisha, 23, have the mental ages of toddlers and can do barely anything for themselves. Alisha also has life-threatening seizures, which require round-the-clock supervision.

"We were in hospital two, or three nights a week at that stage with Alisha and life was extremely difficult for us," Sushila says. "We could sleep for 10 minutes, maybe an hour, before we had to get up to her again."

When Sushila had a breakdown and went on medicine for depression, Royd was left to get up in the night alone - meaning he would be up all night with his daughter and all day with the business. Although Alisha sleeps longer now - she's on medical marijuana - Royd has been left with insomnia, and memory recall issues. "It's like my internal clock is broken," he says.

Sushila Butt and her daughter Alisha at home in Kaitaia. Photo / Doug Sherring
Sushila Butt and her daughter Alisha at home in Kaitaia. Photo / Doug Sherring

Changes to the system first loomed in 2000, when another group of families lodged a claim with the Human Rights Commission, alleging discrimination. Those families - the "Atkinson" plaintiffs - took the case to the Human Rights Review Tribunal and won. The Government appealed the matter to first the High Court, and then the 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.

Tetraplegic Peter Ray says he can't put a value on partner Rosemary McDonald as his carer. Photo / Doug Sherring
Tetraplegic Peter Ray says he can't put a value on partner Rosemary McDonald as his carer. Photo / Doug Sherring

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. She's intelligent, but unable to talk and has intense medical needs.

Talia looks after Sarah full time, 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."

"You are expected to simply be grateful"

During 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.

June Rameka (left) gives her daughter Maraea Waitoa a kiss and cuddle at home. Photo / Alan Gibson
June Rameka (left) gives her daughter Maraea Waitoa a kiss and cuddle at home. Photo / Alan Gibson

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 $23 million a year.

As of 2018, only 354 adults are using the scheme. The families say this is probably because it is so difficult to access - a point acknowledged in the ministry's own evaluation where it calls the process "extensive", "complex" and "daunting."

Partially this is because to get the funding, the disabled person has to make an informed choice. For those with an intellectual disability in particular, that can be almost impossible.

For others, it can be too stressful, or take so long they give up. Many simply don't have the time amid their daily tasks.

Gilly Hart (left), here with caregiver mother Angela, says the assessment process can be
Gilly Hart (left), here with caregiver mother Angela, says the assessment process can be "really demeaning". Photo / Martin Hunter

Angela and Gilly Hart, of Christchurch, said it took four months to get approved - with their needs assessor first agreeing they were eligible, then changing their mind, and then changing it back again.

"If we hadn't been absolutely sure that we are, we might not have argued," Angela said. "It's no wonder there are only 300 or so families getting it."

Gilly, 37, who has muscular dystrophy and is cared for by her mum, said the assessment process itself was also offensive.

"I think you should be able to look at most disabled people and say, this person needs a caregiver all the time, or most of them time, or some of the time," she says.

"I don't it think it should go into how many minutes someone needs to be toileted. That you have a bowel motion twice a day and that's two mins of caregiver input. That's demeaning. That's really demeaning."

Angela says even if you jump through all the hoops, you're not guaranteed to be paid for the all the hours you work. But it's very difficult to argue, as the decision-making is not transparent - and you can't go to court.

"You are expected to simply be grateful," she says. If not, the threat of residential care is a constant spectre - one which terrifies them both.

"That is likely a death sentence in Gilly's case, and even if it wasn't, it is unacceptable to her."

Despite the difficulties, Angela and Gilly say since being approved for Funded Family Care, the payments have improved their lives. They are able to make minor repairs to their home, such as fixing a wheelchair ramp, or faulty appliances.

"We've been able to get out to social and recreational activities, which we couldn't afford to do before," Angela says. "We were isolated because we were very poor. We're still poor, but much better off than before."

Now, they say, the focus should be on making such funding more accessible, more fair, and the pay more equitable. The first step, in their minds, would be to repeal 4A of the New Zealand Public Health and Disability Act, instead replacing it with something that does not discriminate at all.

Families' fears over being forgotten

Part 4A, and the way it was rushed through under urgency, has already been widely criticised, including by the United Nations.

In its Concluding Observations, the 2014 United Nations Committee on the Rights of Persons with Disabilities said it was "concerned" both that some family carers were denied payment, and that they were prevented taking cases to court.

 Sushila Butt's son Ashneel, 26, has the mental age of a toddler and can barely do anything for himself. Photo / Doug Sherring
Sushila Butt's son Ashneel, 26, has the mental age of a toddler and can barely do anything for himself. Photo / Doug Sherring

The government responded by saying Funded Family Care was under review. The second part, about the right to legal challenges, was ignored in its response.

Lawyers and human rights advocates are also scathing. One of the most outspoken opponents has been Otago University law professor Andrew Geddis, who labelled the move "constitutionally outrageous".

"Firstly, it's trying to insulate government decisions from the law. Secondly, it was legislation that targeted some of the most vulnerable and powerless people in our society," Geddis says.

"Now they have no effective means of pursuing what the law says they are entitled to. It was absolutely bullying behaviour."

The legislation also featured in former politician Geoffrey Palmer's book about the need for a formal constitution; and is currently the subject of a petition by the Disabled Persons Assembly, brought before the health select committee with support from the Human Rights Commission.

When the law was passed in 2013, National, the Maori Party and United Future all voted for the bill. New Zealand First, the Green Party and the Labour Party opposed. In total, 11 Labour MPs stood in the House to argue it should be at least slowed down, if not thrown out.

Former Green MP Catherine Delahunty - probably the the families' most dedicated champion in Parliament - says she still feels exactly the same.

"Now that we're rid of the National government, it's time to change it," she says. "I'm expecting Labour and the Greens to get rid of it. If I was still in Parliament it would be one of the first things I'd do."

Pre-election, the Labour Party wrote in its manifesto it would repeal the law, and would ensure all family caregivers can "provide and be paid for assessed care for their disabled adult family member".

Since entering government, however, the families say they've heard little about the issue, and fear they may have been forgotten.

When asked about the issue by the Herald, Health Minister David Clark 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.

"I completely understand the depth of feeling on this issue and have the utmost respect for those families that care for high-needs family members at home," he said.

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 was awaiting ministry advice on the best way to proceed.

However, neither would commit to repealing the law outright.

The Ministry of Health this week said it had accepted the court's view that Funded Family Care was difficult to navigate. The policy was under review, it said - 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 attempt to make the assessments more sensitive.

"We're very disappointed to hear feedback that some feel the process demeaning," she said. "We view this seriously and will keep working hard on our communication with disabled people and their families."

The ministry would not say whether it would move to settle other cases without litigation. It was still "considering the implications" of the Chamberlain decision, it said.

Lawyers Frances Everard, left, and Simon Judd are taking the cases of 13 disabled plaintiffs to the High Court. Photo / Jason Oxenham
Lawyers Frances Everard, left, and Simon Judd are taking the cases of 13 disabled plaintiffs to the High Court. Photo / Jason Oxenham

The families' lawyers, Simon Judd and Frances Everard, say they remain hopeful they will be able to settle the compensation case without the need for drawn-out proceedings.

"What we are asking for is fair. How can it not be fair to pay people for the work that they have actually done."

As for the plaintiffs, they will keep on keeping on.

Sushila and Royd continue to allege unfair treatment, and so far have had three email addresses blocked by Parliament for their steady stream of correspondence.

Peter and Rosemary wrote to each Labour MP who opposed the bill when Labour was elected, but haven't heard back from any yet.

Peter's one hope is that he dies before Rosemary, so he never has to rely on the state to care for him again, as he did before they met. He knows some people won't understand why it's so important she looks after him, but it's their choice, and one they are entitled to make, he says.

"You can't place a value on having Rosemary as my carer. It gives me security. Someone that cares about me and goes the extra mile. It's the little things, like if my legs hurt at night she helps," Peter says.

"It's having a life, quality of life. You can't put a value on that."