A mother is still battling the Government in court over pay for the care of her disabled son, despite years of fighting and repeated decisions in her favour. Kirsty Johnston reports.

Every day last week, Margaret Spencer arrived at the beautiful, imposing High Court at Auckland with her adult son Paul. Ms Spencer, thin and grey-haired; Paul, small and lithe, his quick movements initially belying his Down syndrome.

They hurried, usually, to make sure Paul could go to the toilet before the session began - across the brick courtyard, through the metal detector and up a noisy flight of stairs, to Courtroom 8.

The courtroom, a small chamber with a view of the street, was cluttered and claustrophobic.

More than 20 cardboard boxes of evidence, carried on trolleys by junior lawyers, had to be stacked against the windows, with dozens of extra folders laid out on tables, or on the floor.


Suitcases full of files were piled behind the seats of the public gallery, where they leaned precariously. On the bench sat Justice Patrick Keane, supported by two lay members of the Human Rights Review Tribunal.

Three lawyers in flowing black robes represented the Crown - including former Dean of the Auckland Law School, Professor Paul Rishworth, QC - and three for the Human Rights Commission. Jim Farmer, QC - representing Ms Spencer - and his team brought the total number of lawyers to 10.

Ms Spencer and Paul, in matching navy blazers, sat at the back of the court - the mother, sitting ramrod straight; her son, head occasionally drooping, waiting patiently for the talking to be done.

Occasionally, supporters, media or witnesses would join them in the gallery, some of those supporters accompanied by their own, dependent adult children, such as Cliff Robinson, who brought Marita and Johnny, both sufferers of Microcephaly.

"Ludicrous, isn't it," Mr Robinson said during the morning break. "All of that, for one woman and her disabled son."

Margaret Spencer's case has been before the courts for four years. It is the culmination of a 25-year battle to be paid for the work she does for Paul, 47, who still lives at home and requires the same care as a toddler.

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So far the Crown case has cost at least $500,000 of taxpayer money, most likely a lot more. It's been through three courts, in two cities, with each judgment finding strongly in Ms Spencer's favour.

The most recent decision opened the door to compensation for her repeated discrimination at the hands of a government policy that prohibited the payment of family carers.

She is seeking back pay and damages for humiliation of upwards of $200,000. The Ministry of Health does not want to pay. It is continuing to fight, hard. But as the case drags on, it is increasingly unclear why.

At the beginning, the family carer issue revolved almost entirely around money. Before Ms Spencer's case, a group of eight families had challenged the Government's policy on the issue through the Human Rights Review Tribunal. After years of appeals, they won, in what is now known as the Atkinson decision.

During those hearings, the Crown argued the case would have wide-reaching fiscal implications. 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.

The Government was also concerned about having to pay compensation to the families for their years under the old policy.

So concerned, in fact, that following the Atkinson decision, a law was rushed through Parliament under urgency to prohibit further families joining the proceedings, or taking action against it in court.

So far, however, its fears have not been borne out. As of 2014, of the 9400 family carers in New Zealand, fewer than 100 were receiving payment for their work - including Ms Spencer, who started being paid in 2014. They are paid the minimum wage of $14.25.

As for the compensation, which the High Court said Ms Spencer could apply for despite the new law, so far only five other families have applied to join the case. To qualify, they need complaints that pre-date Atkinson, which only a few more families have.

Last week in court, Human Rights Commission lawyer Andrew Butler said despite the Crown's continued reference to "fiscal consequences" the figures were tangible evidence there was no floodgate scenario.

"It's a trickle, it's not a flood," he said.

Justice Keane interrupted: "It's not the Tukituki."

Mr Butler: "This is a little puddle at the back of the garage, that's all it is."

The Human Rights Commission believes Ms Spencer is entitled to damages, and as such criticised the Crown's position as "black and white".

The Crown wants no payment at all.

"[The Crown] says it is exposed to fiscal risks but nowhere does it say what should be done instead of going for the nuclear option," he said.

"And that doesn't send the right signal to public servants, doesn't send the right signal to people like Margaret Spencer about whether it's worth the effort, cost and trauma in taking litigation."

The rest of the Crown's argument against Ms Spencer is more complex. The Herald asked for a copy of its statement of defence to better understand its position and were told the lawyers were "too busy" to email it through.

Largely, Mr Rishworth spoke about the ways that Ms Spencer's case differed from the original Atkinson decision, saying that claim had been about Disability Support Services while Ms Spencer's was more about residential care.

The arguments about how much Ms Spencer did for Paul - and consequently how much she would be entitled to if compensation was granted - at times came down to tiny details.

Queries on intimate details of Margaret Spencer’s care of Paul have disgusted rights advocates. Photo / Brett Phibbs
Queries on intimate details of Margaret Spencer’s care of Paul have disgusted rights advocates. Photo / Brett Phibbs

Various assessments of Paul's needs were discussed - one that said he needed 70 hours of care per week, and another (done by a reviewer who hadn't met the family) that said 58.

At one point, when Ms Spencer took the stand, she was asked about intimate details of Paul's toileting - while he remained in court. During the cross-examination, one disability support advocate who did not want to be named said she had to leave. "I couldn't listen," she said. "So much for the dignity that our disability strategy talks about."

The Crown also made mention of "natural support", an argument it ran in the Atkinson case which says that caring for a disabled family member is part of some unspoken social contract - a duty that families have - and in Ms Spencer's case, choose to have instead of sending Paul to a residential facility.

Mr Rishworth also argued the claim shouldn't be about the entire disability service and its flaws.

"If the Government wasn't doing enough then those are political arguments," he said.

Those who have followed Ms Spencer's case, like Mr Robinson - himself an original Atkinson plaintiff - are cynical about the Crown's decision to continue litigation despite the courts' repeated findings against it. "They'll take this ... to the Supreme Court," he said. "They won't give up."

Ms Spencer, at that suggestion, took a long pause. "I think it would be convenient for them if I just popped off to the grave," she said.

Is she unwell? "It's certainly taken a toll. Look, if you're well-heeled you mightn't be fussed. But if you're not life is [tough]."

Fortunately for Ms Spencer, Jim Farmer was taking the case pro bono. She wouldn't be able to afford it otherwise.

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Ms Spencer was reluctant to speculate as to the Ministry of Health's motivations in the case until a decision was made.

Green Party MP Catherine Delahunty, a long-time supporter, was less inhibited.

"I think the Ministry of Health have locked themselves into a pathological view of family care. They refuse to accept their view is ... illegal, so they're pushing it right to the end," she said.

She also believes the case has become personal - not just against Ms Spencer, who is well known for her forthright views, but against all the families. "In saying that, I still can't understand their inability to read the message from the courts.

It's bizarre. This is just a small group, and yet the full strength and resources of the state have been used against them and it's appalling."

University of Otago law professor Andrew Geddis, who also has a strong interest in the case, said the only logical reason for the Crown's continued opposition was its fear of precedent - not only for family carers, but perhaps for those looking after the elderly, or high needs children.

"Maybe there's been a suggestion of risk and that's clouded their thinking," he said. "But it does seem to make very little sense that the Crown has been absolutely caned by the courts and they keep going back. Isn't that the definition of insanity? Doing the same thing over and over and expecting a different result?"

In response to a question about why it opposed compensating Ms Spencer, the Ministry of Health said there was little it could say with the case before the courts.

"However," said chief legal adviser Phil Knipe, "the issues are wider than the individual circumstances of the complainant in this case."

Justice Keane has reserved his decision.

Q&A: Battle for compensation

What is the case about?

The mother of a man with Down syndrome, Margaret Spencer, is seeking compensation for his care during the years she went unpaid through a Ministry of Health policy. The policy, which said family carers could not be paid for looking after their disabled loved ones, was found to breach the Bill of Rights Act.

How did it get to this stage?

Ms Spencer first complained to Prime Minister Helen Clark in 2001, saying she wanted to be paid for looking after her son, Paul. She complained to the Human Rights Commission in 2007.

The Human Rights Review Tribunal was already taking a case for another group of families. When they won, Ms Spencer applied to join retrospectively and was refused because the Government passed a law to stop her. She also applied for funding under a new family care policy, and was refused.

She took both decisions to court and won, including on appeal. The court ruled she was allowed to apply for compensation - hence the current case.

What does she want?
She wants compensation for her care of Paul from 2001 to 2014, and damages for humiliation and loss of dignity. The claim is believed to be for more than $200,000.

Why does Paul live at home, and not in residential care, where the state would pay for him?

Because he doesn't want to.

What does the Government say?

It does not think Ms Spencer should be paid, and if she is, it seeks to limit the amount to prevent claims from other families. The Human Rights Commission says only five other families are in the same position.

What happens next?

Justice Keane will decide whether Ms Spencer will be paid, and how much.